MICA: Assessing the therapeutic efficacy of 11beta-hydroxysteroid dehydrogenase type 1 inhibitor (AZD4017) in idiopathic intracranial hypertension
Lead Research Organisation:
University of Birmingham
Department Name: Clinical and Experimental Medicine
Abstract
Idiopathic intracranial hypertension (IIH), a condition of raised brain pressure, is a common cause of blindness in young overweight women. The underlying cause of the condition has not been fully established and the best way to treat IIH is not known. Drugs such as acetazolamide, have not been shown to be effective and additionally have intolerable side effects. Brain fluid shunting surgery can be used to save vision, but shunts block in over half of patients and therefore need replacing, often multiple times. Treatments such as weight loss are notoriously difficult. Our recent research has highlighted the potential role of an enzyme that generates steroid locally in brain tissues. 11beta-hydroxysteroid dehydrogenase type 1 (11beta-HSD1) generates active steroid within the parts of the brain that produce cerebrospinal fluid (CSF) - the fluid that bathes the brain. Production of too much CSF can lead to increased brain pressure in IIH and we believe that 11beta-HSD1 drives this process in IIH. Additionally, we have demonstrated that weight loss and brain pressure reduction which significantly improve IIH also reduced 11beta-HSD1 activity. We therefore suggest that reducing 11beta-HSD1, with an oral tablet of AZD4017 (an inhibitor of 11beta-HSD1 developed by AstraZeneca) may represent a landmark treatment for IIH.
Through a partnership between AstraZeneca and University of Birmingham we will conduct a randomised, blinded, clinical study (24 patients) to look at the effectiveness, safety and side effects of AZD4017 in the treatment of IIH. Patients will undergo a series of investigations to assess brain pressure (through a lumbar puncture), vision and headaches at the start and end of the 3 month study. We will also be conducting regular monitoring of urine and blood alongside detailed patient assessments to evaluate drug safety and side effects.
This will be the first study to investigate the role of 11beta-HSD1 inhibitors in IIH and has the potential to offer a novel treatment in this condition which can cause blindness. Additionally, if effective, AZD4017 may have uses in other neurological conditions where the morbidity is related to elevated brain pressure.
Through a partnership between AstraZeneca and University of Birmingham we will conduct a randomised, blinded, clinical study (24 patients) to look at the effectiveness, safety and side effects of AZD4017 in the treatment of IIH. Patients will undergo a series of investigations to assess brain pressure (through a lumbar puncture), vision and headaches at the start and end of the 3 month study. We will also be conducting regular monitoring of urine and blood alongside detailed patient assessments to evaluate drug safety and side effects.
This will be the first study to investigate the role of 11beta-HSD1 inhibitors in IIH and has the potential to offer a novel treatment in this condition which can cause blindness. Additionally, if effective, AZD4017 may have uses in other neurological conditions where the morbidity is related to elevated brain pressure.
Technical Summary
Idiopathic intracranial hypertension (IIH), is a common condition of unknown aetiology affecting the young obese female population (20 per 100,000). Faced with the global obesity epidemic, its incidence is expected to rise further. IIH is characterised by elevated intracranial pressure (ICP) which manifests as disabling headaches and severe visual loss in up to 25% of patients. An evidence base for treatment has not been established and there are currently no effective and tolerable pharamcotherapeutic options. Based upon our in-vitro observations, we have hypothesised that increased local glucocorticoid generation through the activity of 11beta-hydroxysteroid dehydrogenase type 1 (11beta-HSD1) within the choroid plexus that generates cerebrospinal fluid (excess production leading to raised ICP) is crucial to the pathogenesis of IIH. This mechanism is analogous to that occurring in the ocular ciliary body which produces aqueous humor where 11beta-HSD1 inhibitors have been shown to lower intraocular pressure. We have recently published a seminal study in patients with IIH and demonstrated that weight loss significantly reduced 11beta-HSD1 activity, ICP and dramatically improved patient symptoms; the observed reduction in ICP correlated directly with the reduction in ICP.
In collaboration with our industrial partner, AstraZeneca (AZ), we will conduct a double blind, placebo controlled randomised phase II study to assess the tolerability, safety and efficacy of the selective 11beta-HSD1 inhibitor, AZD4017, in the treatment of IIH. The study will be conducted at University Hospitals Birmingham NHS Foundation Trust, the Midlands Eye Centre and the Wellcome Trust Clinical Research Facility. In total, 24 patients with active chronic IIH (raised ICP and papilloedema) will be randomised to AZD4017 or placebo tablets (1:1).The primary outcome measure, intracranial pressure, will be evaluated by lumbar puncture at 12 weeks compared to baseline.
In collaboration with our industrial partner, AstraZeneca (AZ), we will conduct a double blind, placebo controlled randomised phase II study to assess the tolerability, safety and efficacy of the selective 11beta-HSD1 inhibitor, AZD4017, in the treatment of IIH. The study will be conducted at University Hospitals Birmingham NHS Foundation Trust, the Midlands Eye Centre and the Wellcome Trust Clinical Research Facility. In total, 24 patients with active chronic IIH (raised ICP and papilloedema) will be randomised to AZD4017 or placebo tablets (1:1).The primary outcome measure, intracranial pressure, will be evaluated by lumbar puncture at 12 weeks compared to baseline.
Planned Impact
Over the last 2 decades, the investigators on this proposal have established glucocorticoid regeneration through the activity of 11beta-hydroxysteroid dehydrogenase type 1 (11beta-HSD1) as a therapeutic target in many conditions including idiopathic intracranial hypertension (IIH). They have published many of the seminal studies in the highest impact journals (Lancet, JCI, BMJ, Nature Genetics). Reflecting the impact of their work, in 2011, 11beta-HSD1 ranked as the 2nd most popular pharmaceutical drug target in terms of number of patents filed (>40 US patents, >90 EU patents). They have now established a unique academic-industrial collaboration between University of Birmingham and AstraZeneca (AZ) to trial the selective 11beta-HSD1 inhibitor, AZD4017 in a defined population of patients with IIH. Within this collaboration, AZ have provided the active compound and placebo as well as all relevant preclinical and phase I clinical data to facilitate study design based upon the academic hypothesis. Complementing this, UoB have brought clinical trial expertise and state-of-the-art methodologies combining neurology, ophthalmology and endocrinology. The close working relationship between University Hospital Birmingham NHS trust and the Birmingham and Midlands Eye Centre which together provide one of the largest IIH services in the country will ensure that sufficient patients are recruited through the dedicated neuro-ophthalmology clinics.
On a global level, the impact of this successful collaboration between UoB and AZ will serve as a model for other academic institutions and pharmaceutical company interactions and it is hoped that this will be adopted nationally and internationally. There are clear additional benefits of these collaborations for patients and non-academics. Patients will have the potential access to new and emerging treatments sooner than would otherwise have been possible. Furthermore, it provides the opportunity to consider indications for drug therapy that may not have been considered by the pharmaceutical company.
The specific academic impact is clear and this proposal will add significantly to the field representing the first clinical trial of this class of drug in patients with IIH. Positive results from this study targeting glucocorticoid metabolism will undoubtedly pave the way for future drug development. The impact upon patient care has the potential to be equally impressive offering a new treatment in a condition where currently proven efficacious pharmacotherapies are lacking.
In conclusion, this proposal is one of the crucial chapters in the '11beta-HSD1 story' that has developed from target identification and validation through to drug development and now to trials in disease populations. It is this final component that adds the greatest impact both academically, but perhaps more importantly to patients with the aim of improving health care.
On a global level, the impact of this successful collaboration between UoB and AZ will serve as a model for other academic institutions and pharmaceutical company interactions and it is hoped that this will be adopted nationally and internationally. There are clear additional benefits of these collaborations for patients and non-academics. Patients will have the potential access to new and emerging treatments sooner than would otherwise have been possible. Furthermore, it provides the opportunity to consider indications for drug therapy that may not have been considered by the pharmaceutical company.
The specific academic impact is clear and this proposal will add significantly to the field representing the first clinical trial of this class of drug in patients with IIH. Positive results from this study targeting glucocorticoid metabolism will undoubtedly pave the way for future drug development. The impact upon patient care has the potential to be equally impressive offering a new treatment in a condition where currently proven efficacious pharmacotherapies are lacking.
In conclusion, this proposal is one of the crucial chapters in the '11beta-HSD1 story' that has developed from target identification and validation through to drug development and now to trials in disease populations. It is this final component that adds the greatest impact both academically, but perhaps more importantly to patients with the aim of improving health care.
Organisations
- University of Birmingham (Lead Research Organisation)
- Gloucestershire Royal Hospital (Collaboration)
- University of Copenhagen (Collaboration)
- King's College Hospital (Collaboration)
- NHS Greater Glasgow and Clyde (NHSGGC) (Collaboration)
- Washington University School of Medicine (Collaboration)
- Moorfields Eye Hospital NHS Foundation Trust (Collaboration)
- Leicester General Hospital (Collaboration)
- ROYAL STOKE UNIVERSITY HOSPITAL (Collaboration)
- Royal Hallamshire Hospital (Collaboration)
- THE WALTON CENTRE (Collaboration)
Publications
Adderley NJ
(2019)
Association Between Idiopathic Intracranial Hypertension and Risk of Cardiovascular Diseases in Women in the United Kingdom.
in JAMA neurology
Aguiar M
(2021)
The Health Economic Evaluation of Bariatric Surgery Versus a Community Weight Management Intervention Analysis from the Idiopathic Intracranial Hypertension Weight Trial (IIH:WT).
in Life (Basel, Switzerland)
Alimajstorovic Z
(2023)
Dysregulation of Amino Acid, Lipid, and Acylpyruvate Metabolism in Idiopathic Intracranial Hypertension: A Non-targeted Case Control and Longitudinal Metabolomic Study.
in Journal of proteome research
Alimajstorovic Z
(2020)
Guide to preclinical models used to study the pathophysiology of idiopathic intracranial hypertension
in Eye
Guideline Title | Idiopathic intracranial hypertension: consensus guidelines on management. |
Description | IIH Clinical Guidelines |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Citation in clinical guidelines |
Impact | These were the first ever consensus guidelines on treating IIH and are the top read article on JNNP over the last 6 months. They have been read by members othe public as well as clinicians, across the UK, Europe, North and South America and other countries. The benefits should be improved quality of life for IIH patients, and improvements in clinical treatment, including less unnecessary procedures. |
URL | https://jnnp.bmj.com/content/89/10/1088 |
Description | Impacted on how IIH is treated internationally (following IIH weight trial) - data presented in presenttions and numerous review papers |
Description | Drummond Foundation |
Amount | £30,000 (GBP) |
Organisation | Drummond Foundation |
Sector | Charity/Non Profit |
Country | Canada |
Start | 01/2017 |
End | 12/2020 |
Description | Midland Neuroscience Teaching & Research Fund consumables funds |
Amount | £38,320 (GBP) |
Organisation | Midland Neuroscience Teaching and Research Fund |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 01/2017 |
End | 12/2020 |
Description | • Midland Neuroscience Teaching & Research Fund |
Amount | |
Organisation | Midland Neuroscience Teaching and Research Fund |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start |
Title | IIH:Life |
Description | |
Type Of Material | Database/Collection of data |
Provided To Others? | No |
Description | Copenhagen - advance in vitro work |
Organisation | University of Copenhagen |
Country | Denmark |
Sector | Academic/University |
PI Contribution | Advance in vitro work to develop new candidate drugs to treat IIH. Their PhD student was trained in my lab. |
Collaborator Contribution | Advance in vitro work to develop new candidate drugs to treat IIH. My post doc attended their lab for training. |
Impact | Funding applications and ongoing in vivo studies. Lab members regularly traveling to their centre. Joint papers. Research outputs. yearly collaborative meetings. Regular skype meetings. Joint grant applications - the Lundbeck Foundation |
Start Year | 2013 |
Description | Intracranial pressure animal models |
Organisation | Washington University School of Medicine |
Country | United States |
Sector | Academic/University |
PI Contribution | Contribution to joint publications |
Collaborator Contribution | They trained our phd student in ICP MRI technique |
Impact | Joint publication on hydrocephalus; raised ICP studies |
Start Year | 2016 |
Description | OCT interpretation and artificial intelligence to identify papilloedema and raised ICP |
Organisation | Moorfields Eye Hospital NHS Foundation Trust |
Country | United Kingdom |
Sector | Public |
PI Contribution | Discussion on using OCT visual imaging for papilloedema with the insights from out group-developed novel analysis paradigm |
Collaborator Contribution | Dr Pearse Keane has aided in assessing the quality of and giving advice on the interpretation of optical coherence tomography, which has improved assessments used in both IIH:WT and IIH:DT trials. Further, he has expertise on OCT imaging and developed ideas on imaging sequences with us for papilloedema |
Impact | Multi-disciplinary - ophthalmology / neurology. Joint publication. |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | Gloucestershire Royal Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | King's College Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | Leicester General Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | NHS Greater Glasgow and Clyde (NHSGGC) |
Country | United Kingdom |
Sector | Public |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | Royal Hallamshire Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | Royal Stoke University Hospital |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Description | UK IIH Research Network |
Organisation | The Walton Centre |
Country | United Kingdom |
Sector | Hospitals |
PI Contribution | The partnership has been to establish the foundations of a UK-wide research network in IIH. Our contributions have been to set up the trials, approach and involve collaborators, and set them up as research sites in the IIH:DT and IIH:WT trials. This has involved: o King's College London, Professor Peter Goadsby (Honorary Consultant Neurologist) and Mr Eoin O'Sullivan (Consultant Ophthalmologist) o The Walton Centre, Liverpool, Dr Nick Silver, Dr Anita Krishnan (Consultant Neurologists) and Mrs Carmel Noonan (Consultant Ophthalmologist) o Royal Hallamshire Hospital Sheffield, Dr Simon Hickman (Consultant Neurologist) o Southern General Hospital Glasgow, Dr Alok Tyagi (Consultant Neurologist) Dr Ben Wakerley (Gloucester / Oxford), Dr Simon Hickman (Royal Hallamshire), Dr Mark Lawden (Leicester General) and Dr Brendan Davies (Staffordshire). |
Collaborator Contribution | They have become sites or identification sites for the IIH:DT and IIH:WT trials. Future contributions will be recruiting participants to trials. |
Impact | Multi-discplinary - neurology and ophthalmology |
Start Year | 2015 |
Title | IIH:DT RCT (• Lowering Intracranial Pressure in Idiopathic Intracranial Hypertension: Assessing the therapeutic efficacy and safety of an 11ß-hydroxysteroid dehydrogenase type 1 inhibitor (AZD4017)) |
Description | |
Type |
Description | BMJ talk medicine |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Following the development of the first ever guidelines for the investigation and management of idiopathic intracranial hypertension, Dr Sinclair discussed them with the JNNP podcast on "BMJ talk medicine". This podcast has been listened to over 1000 times and has helped to spread the publication of these guidelines, which will directly impact and improve patient treatment in the UK and beyond. |
Year(s) Of Engagement Activity | 2018 |
URL | https://soundcloud.com/bmjpodcasts/idiopathic-intracranial-hypertension-guidelines-for-diagnosis-and... |
Description | CSF symposium |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Supervised PhD student Keira Markey presented "Phase II Study to Assess the Efficacy and Safety of an 11ß-Hydroxysteroid Dehydrogenase Type 1 Inhibitor (AZD4017) in Idiopathic Intracranial Hypertension: IIH:DT". The impact of this was to generate interest in the forthcoming publication of these results. |
Year(s) Of Engagement Activity | 2018 |
Description | GLP-1 Press release |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Media (as a channel to the public) |
Results and Impact | A press release by the University of Birmingham on the use of Exendin-4 was taken up by international media outlets from UK to Australia to India. The press release described research on this drug and it's affect on brain pressure by Dr Sinclair and reached a potential audience of over 3,000,000. This generated positive press for Dr Sinclair, University of Birmingham and funders NIHR. |
Year(s) Of Engagement Activity | 2017 |
URL | https://www.medscape.com/viewarticle/884659 |
Description | Glasgow Southern General Hospital Oct 2015 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | Informing, generated discussion and question Increased interest in clinical trial portfolio |
Year(s) Of Engagement Activity | 2015 |
Description | Head of the Cerebrospinal Fluid Disorders Research Group, University of Birmingham |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Type Of Presentation | Workshop Facilitator |
Geographic Reach | Local |
Primary Audience | Other academic audiences (collaborators, peers etc.) |
Results and Impact | Regular working group (quarterly) and dicussions to enhance collaborations (local and international) organising visiting professors from USA to teach skills and write collaborative grants |
Year(s) Of Engagement Activity | 2012 |
Description | IIH Guidelines |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Media (as a channel to the public) |
Results and Impact | University of Birmingham and University Hospitals Birmingham issued the press release "New guidelines aim to improve diagnosis and treatment for condition that can leave young women blind" to publicise the first ever guidelines for the treatment of IIH. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.birmingham.ac.uk/university/colleges/mds/news/2018/10/brain-pressure-guidelines.aspx |
Description | IIH JLA |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | I led a James Lind Alliance Priority Setting Partnership in IIH with patients, carers, and clinicians to identify the top 10 research priorities for further research. This has given support for future research directions. |
Year(s) Of Engagement Activity | 2016,2017,2018 |
Description | IIH UK Patient charity talk |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Participants in your research and patient groups |
Results and Impact | The presentation resulted in a substantial question and answer session with discussion from the audience. Afterwards, the trials team were approached for information on the trials, including information on how to participate, with some patients giving details to be contacted by the team to take part. After this patient conference the trials team received an increased number of requests for information about or participation in their trials. The trials websites received increased traffic after the conference (doubled in June 2015). |
Year(s) Of Engagement Activity | 2015 |
URL | http://www.iih.org.uk/index.php?option=com_content&view=article&id=91 |
Description | IIH UK national patient conference June 2015 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Participants in your research and patient groups |
Results and Impact | Informing, generated discussion and questions from patients: • Invited speaker at the IIH UK national patient conference June 2015, Birmingham, UK. generated interest and enquiries to participate in our clinical trial portfolio |
Year(s) Of Engagement Activity | 2015 |
Description | IIH:DT presentation at West Midlands CSF Dysorders Symposium 2014 |
Form Of Engagement Activity | |
Part Of Official Scheme? | No |
Primary Audience | |
Year(s) Of Engagement Activity |
Description | IIHUK - Top 10 IIH patient questions video series |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | With the patient charity IIHUK I produced a series of videos available on youtube and the charity's site discussing the top 10 (chosen by patients) questions in IIH. This has helped patients understand their condition and has informed patient choice on treatment options. |
Year(s) Of Engagement Activity | 2017 |
URL | https://www.youtube.com/channel/UCEpwmN0MWtQ-6hRSL4A1Vpw |
Description | IIHUK Information Sheet authoring and approval |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | I produced the IIHUK patient information sheets for the charity's websites. This has helped patients understand their condition and has informed patient choice on treatment options. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.iih.org.uk/leaflets |
Description | Midlands Neurology |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Supervised PhD student Keira Markey presented "Phase II Study to Assess the Efficacy and Safety of an 11ß-Hydroxysteroid Dehydrogenase Type 1 Inhibitor (AZD4017) in Idiopathic Intracranial Hypertension: IIH:DT" and won best research presentation (Michael Jepherson award). The impact of this was to generate interest in the forthcoming publication of these results. |
Year(s) Of Engagement Activity | 2018 |
Description | Migraine Trust International Symposium |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Supervised PhD student Keira Markey presented "Phase II Study to Assess the Efficacy and Safety of an 11ß-Hydroxysteroid Dehydrogenase Type 1 Inhibitor (AZD4017) in Idiopathic Intracranial Hypertension: IIH:DT" and won first prize for platform presentation, winning the trainee excellence award. The impact of this was to generate interest in the forthcoming publication of these results. |
Year(s) Of Engagement Activity | 2018 |
Description | Patron of IIH UK patient charity |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Participants in your research and patient groups |
Results and Impact | Being patron of the main IIH patient charity in the UK has led to closer collaboration with the charity. This has led to their involvement in Patient and Public Involvement aspects of my trials, and to their help with publicising the trials. I have been able to work with the charity trustees to suggest direction for research, and have received their help in patient surveys to preview/inform research questions, for example. We have had patients contact the trials team to then take part in the trials that we would not have otherwise reached. The trials website receive more traffic when the charity's promotion of them/the trials is more active. |
Year(s) Of Engagement Activity | 2014,2015 |
URL | http://www.iih.org.uk |
Description | • Chair and Invited Speaker at the European Neuro-Ophthalmology Society Conference, Oxford, UK. 11/04/13 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Type Of Presentation | Keynote/Invited Speaker |
Geographic Reach | International |
Primary Audience | Other academic audiences (collaborators, peers etc.) |
Results and Impact | Invited to Chaired a morning session and organised the speaker list. Then invited to present my research on Idiopathic Intracranial Hypertension Oxford, UK. 11/04/13 title: Obesity and the Female Brain: a High Pressure situation! Multiple offers of collaboarion internationally |
Year(s) Of Engagement Activity | 2013 |
Description | • Invited Speaker at UK Neuro-Ophthalmology Special Interest Group Conference, Glasgow. 13/03/13 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | Yes |
Type Of Presentation | Keynote/Invited Speaker |
Geographic Reach | National |
Primary Audience | Other academic audiences (collaborators, peers etc.) |
Results and Impact | Conference - UK Neuro-Ophthalmology Title: Idiopathic Intracranial Hypertension: What do we need to know......? Glasgow. 13/03/13 Collaborations and dissemination of research findings |
Year(s) Of Engagement Activity | 2013 |