A randomised controlled trial of the ketogenic diet in the treatment of epilepsy in children under the age of two years

Lead Research Organisation: University College London

Abstract

Epilepsy, a condition where individuals are prone to recurrent epileptic seizures, is the most common chronic neurological disorder in children. Epilepsy onset is most common in the first 2 years of life and at this age is particularly associated with poor prognosis for seizure control and neurodevelopmental outcome. The ketogenic diet (KD) is a medically supervised dietary intervention that is high in fat and restricted in carbohydrate and protein, designed to mimic the effects of starvation on the body. KD therapy has been shown to be an effective treatment for seizure control in children with epilepsy older than 2 years of age. Other associated benefits can be a reduced requirement for both routine and emergency anti-epileptic drugs (AED) and less seizure-related hospital admissions. Although reports suggest that KD therapy also improves seizures in younger children there are no high quality trial data that demonstrate effectiveness and safety in this age group. The KD is resource intensive, requiring dietietic and physician time; data are required to justify expansion of services to cater for the apparent need. There are also few data on treatment of infantile spasms, the most common seizure type in this age group, when first line treatment (corticosteroids or vigabatrin) have failed. We therefore propose a prospective multicentre randomised trial to investigate the effectiveness and safety of the KD in children with epilepsy under the age of 2 years, who have failed to respond to two or more AEDs. We also aim to try and find the underlying basis to the effect of the diet. Children for this study will be recruited from 9 paediatric neurology centres in England who have an established KD service. After a baseline assessment and two week observation period children will be randomly assigned to either receive the KD or a further AED. The allocated treatment will be started and it's effectiveness assessed after 8 weeks of treatment. Standardised seizure diaries will be used to record seizures and related events, questionnaires will be used to assess tolerability of treatment, quality of life and neurodevelopment, and growth and blood biochemistry will be monitored. The information obtained from this study is necessary to optimise choices in epilepsy treatment, aiming to improve outcomes and thus determine whether and when the KD should be considered in this young age group. We are in an excellent position to lead this trial having successfully conducted the first randomised trial investigating KD in older children at Great Ormond Street Hospital. We also have experience of working together with the other centres collaborating in this project which all have established KD services. The requested costs will enable these services to enrol eligible patients into the study and collect results, as well as fund a central research coordinator. Funds are also requested to investigate the possible role of medium chain fatty acids in the effect of the diet

Technical Summary

Onset of epilepsy is most common in the first 2 years of life (56-83/100,000 children/year) and at this age is particularly associated with poor prognosis for seizure control and neurodevelopmental outcome; children resistant to medication are amongst the most burdensome to medical and care services long term. Reduction in seizure frequency and antiepileptic drug (AED) dependence will have beneficial financial implications for NHS service providers. The ketogenic diet (KD) is a high fat, low carbohydrate, resource-intensive treatment designed to induce ketosis and other biochemical changes associated with the state of starvation. Our group published the first randomised controlled trial demonstrating KD effectiveness in children age 2-16 years in 2008; no such trial has been conducted in infants despite open label data suggesting greater effectiveness in this age group. The aim of this proposed project is to determine the effectiveness of the KD compared to alternative further AED treatment in children with epilepsy aged 3 months to 2 years who have failed to respond to two or more pharmacological treatments (AED or corticosteroids). Our hypotheses are that the KD is more effective than conventional management with a further AED in the treatment of infants with drug resistant epilepsy, and that the KD is a safe and tolerable intervention to use in this group. Further, understanding that clarity is required with regard to the underlying mechanism involved in effect, we will be evaluating the role of medium chain fatty acids in the blood of participants on the KD. Recruitment will be from 9 collaborating paediatric neurology centres with existing KD services. Eligible and consented children will undergo baseline assessment, including medical and seizure history, neurological and anthropometric examination, administration of Infant Toddler Quality of Life and Vineland Adaptive Behaviour (neurodevelopmental) questionnaires, and biochemical investigations required for routine monitoring. Standardised seizure recording will be commenced. After a 2-week observation period with no change to regular AEDs, they will be randomised to receive the KD or a further AED. A second assessment (4 weeks after start of treatment) will include clinical review and questionnaire on tolerability for both groups. All assessments/investigations except neurodevelopmental questionnaire will be repeated at 8 weeks. At this appointment, according to patient response, KD (diet group) or AED (standard AED group) will then be continued or changed. Those in the AED group if failed will then be offered KD outside the context of the trial. All patients will be followed and reassessed at 12 months including clinical review, Quality of Life and neurodevelopmental questionnaires, as well as blood evaluation if clinically required. To allow detection of a significant difference in mean percentage change in seizures from baseline between the two groups, at 90% power and 5% significance, accounting for 10% drop out and therapist effect inflation, a total sample size of 160 is required. If drop out is 20%, this sample size will still have 86% power. Primary outcome will be the number of seizures experienced during weeks 6-8. Secondary outcomes will include number of children seizure free, responder rate, KD tolerance as well as the relationship between medium chain fatty acids and seizure control. Data will be analysed using random effects modelling.

Publications

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Van Der Louw E (2016) Ketogenic diet guidelines for infants with refractory epilepsy. in European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society

 
Description Ketocollege
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Update of consensus guidelines on management of chidlren on the ketogenic diet
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Title Evaluation of relationship free fatty acids to seizure control 
Description Previous collaborative work has demonstrated that medium chain fatty acids, namely Decanoic acid, may be responsible for at least some of the antiepileptic effect of the ketogenic diet. We are collecting FFA from children within this trial to evaluate the relationship in infants of seizure control to levels of C10 in the blood 
Type Of Material Database/Collection of data 
Year Produced 2016 
Provided To Others? No  
Impact The results will link with those of the Betashot trial, evaluating the nutritional supplement in the treatment of older children with epilepsy 
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Alexandru Obregia Clinical Psychiatric Hospital
Country Romania 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Carlo Besta Neurological Institute
Country Italy 
Sector Public 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Children's Memorial Health Institute
Country Poland 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Hospices Civils de Lyon
Country France 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Hospital Center of Porto
Country Portugal 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Hospital Sant Joan de Deu
Country Spain 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Hospital and University Center of Coimbra
Country Portugal 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Hospital del Mar-Parc de Salut Mar
Country Spain 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation IRCCS Institute of Neurological Sciences of Bologna (ISNB)
Country Italy 
Sector Charity/Non Profit 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Kuopio University Hospital
Country Finland 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Kuopio University Hospital
Country Finland 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Lille University Hospital
Country France 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Meyer Children's Hospital
Country Italy 
Sector Public 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Necker-Enfants Malades Hospital
Country France 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Neurological Institute Foundation Casimiro Mondino
Country Italy 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Ospedale Pediatrico Bambino Gesu (OPBG)
Country Italy 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Oxford University Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Queen Elizabeth University Hospital
Country United Kingdom 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Sahlgrenska University Hospital
Country Sweden 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation Santa Maria Hospital
Country Portugal 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation St Anne's University Hospital
Country Czech Republic 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University College London Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University Hospital Bonn
Country Germany 
Sector Academic/University 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University Hospital Motol
Country Czech Republic 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University Hospital and Polytechnic La FE
Country Spain 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University Medical Center Freiburg
Country Germany 
Sector Hospitals 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University Medical Center Utrecht (UMC)
Country Netherlands 
Sector Academic/University 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description European Reference Network for Rare and Complex Epilepsies EpiCARE 
Organisation University of Leuven
Country Belgium 
Sector Academic/University 
PI Contribution I have led, and successful attained, a European Reference network for Rare and Complex Epilepsies launched March 2017. I am coordinator of the network. The application involved the coming together of specialist centres, with a focus on advancement of clinical care of individuals with rare and complex epilepsies. This builds on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. The aim of this network is to facilitate clinical care through collaboration and trnaslational research, with the development of registries and standardised protocols.
Collaborator Contribution We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Impact This partnership/collaboration has just been launched. Key deliverables over the first year include 1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. a. To consolidate the care pathway at a national level in each country and consequently the care pathway to discussion at the ERC level b. To consolidate country wide networks, and referral pathway to ERN c. To consolidate the pathway for referral to each sub-network, or ultimately discussion within the virtual MDT d. To continue and widen applicability of the virtual MDT meetings, through the centralised IT platform extending the ongoing work from E-pilepsy. 2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies. a. To establish the individual working groups forming the basis to the work packages b. To establish regular web communication between the working groups 3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment a. To establish the governance structure of the network through consolidation and appointment to the committees; b. To establish the website, coordinated through the central EU c. To establish links with all relevant patient support organisations, and provide links through the website 4. To enhance educational activities and training opportunities across Europe by interchange across the network. 5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start Year 2017
 
Description Dietitian investigator meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact meeting of participating clinicians and dietitians was held at our annual professional meeting, the British Paediatric Nuerology Association, to discuss trial issues
Year(s) Of Engagement Activity 2017
 
Description Ketocollege - dietician & professionals workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Educational workshop for professionals involved in delivering ketogenic diet, and also European Glut1 Conference
Year(s) Of Engagement Activity 2018
 
Description Monthly newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Monthly newsletter to participating sites to highlight recruitment, and address issues that may have arisen
Year(s) Of Engagement Activity 2017
 
Description Participation in hospital initiative - Bake it Better 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact As part of a fundraising event, the GOSH charity have launched a 'bake it better' campaign, for individuals to fund raise through baking. One of our dietitians suggested that this would be a way of raising awareness of the ketogenic diet, and the KIWE study. She led a bking session, and one of the KIWE patients was used as a case study
Year(s) Of Engagement Activity 2017
URL http://www.gosh.org/get-involved/fundraising-events/other-ways-fundraise/bake-it-better-0?gclid=CjwK...
 
Description Regional meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Dietitian presented the study to raise awareness amongst regional paediatricians to encourage referral
Year(s) Of Engagement Activity 2017
 
Description Website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A website developed to produce further information about the study, and update on recruitment
Year(s) Of Engagement Activity 2016,2017
URL https://www.ucl.ac.uk/ich/research/developmental-neurosciences/clinical-neurosciences/kiwe-trial
 
Description ketocollege 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Educational programme about utilisation of the ketogenic diet in epilepsy, in collaboration with the charity Matthews Friends
Year(s) Of Engagement Activity 2017
 
Description webinar to educate dietitians on infant guidelines 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Interactive webinar to raise awareness of the guidelines for use of the ketogenic diet in infants
Year(s) Of Engagement Activity 2017