EPICure@19 - the extremely preterm young adult
Lead Research Organisation:
University College London
Department Name: Neonatology
Abstract
The EPICure study was established in 1995. All births between 20 and 25 weeks of gestation across the United Kingdom and Ireland were identified in a 10-month period. There were 309 surviving children from 4004 births, who have been followed up at 2 1/2, 6 and 11 years of age. The information from this study has been used to derive a range of policy and treatment options for extremely preterm babies. In view of the findings at 11y of continuing high rates of disability, learning problems, respiratory problems and psychological disturbances, and the suggestion from other more mature cohorts that adolescence may be a period of catch up, we propose to re-evaluate the subjects as young adults at 19 years.
The reasons we need to do this are to see whether there has been catch up in terms of their development and to evaluate the longer-term effect of changes we have defined in respiratory function and cardiovascular development, which may have important long-term consequences for their adult life. Given the independence of the young people in the study we will arrange an appointment at the Study centre, based at UCL in Central London. This will allow us to carry out better assessments including a brain MR Scan.
We will evaluate the following areas of functioning: cognition, executive function (attention, processing of information), memory, behaviour, respiratory function and blood vessel stiffness, and sensory thresholds. Our MRI scan will allow us to relate structural and functional measures to these outcomes using state-of-the-art analyses. In addition we will undertake a lifestyle interview with each child.
The importance of these evaluations is several fold: we will be assessing children at the peak of their physical performance as they transition to adult life making this the best time to assess the effects of being born so early on growth, lungs and blood vessels and to work out how accurate our childhood assessments of these were; secondly we can evaluate how predictive our assessments of cognitive and executive performance were in childhood, or to what extent there is catch up over the teenage years; thirdly we can work out which are the key outcomes in adult life that matter and look back at the early life measures we have already collected and suggest better focused targeting of interventions to improve the young adult outcomes.
The reasons we need to do this are to see whether there has been catch up in terms of their development and to evaluate the longer-term effect of changes we have defined in respiratory function and cardiovascular development, which may have important long-term consequences for their adult life. Given the independence of the young people in the study we will arrange an appointment at the Study centre, based at UCL in Central London. This will allow us to carry out better assessments including a brain MR Scan.
We will evaluate the following areas of functioning: cognition, executive function (attention, processing of information), memory, behaviour, respiratory function and blood vessel stiffness, and sensory thresholds. Our MRI scan will allow us to relate structural and functional measures to these outcomes using state-of-the-art analyses. In addition we will undertake a lifestyle interview with each child.
The importance of these evaluations is several fold: we will be assessing children at the peak of their physical performance as they transition to adult life making this the best time to assess the effects of being born so early on growth, lungs and blood vessels and to work out how accurate our childhood assessments of these were; secondly we can evaluate how predictive our assessments of cognitive and executive performance were in childhood, or to what extent there is catch up over the teenage years; thirdly we can work out which are the key outcomes in adult life that matter and look back at the early life measures we have already collected and suggest better focused targeting of interventions to improve the young adult outcomes.
Technical Summary
We aim to perform a further evaluation as young adults of the EPICure cohort, who were born at 25 weeks of gestation or less in the UK and Ireland during 1995 who were last evaluated at 11 years. There is some suggestion from other and more mature cohorts that there may be some amelioration of impairments, relative to controls over adolescence. At 19 years we will determine continuities in neurologic, psychological and psychiatric outcomes, to evaluate the effect of adolescence on somatic growth, lung function and cardiovascular trajectories compared to young adults who had been their classmates, to describe their employment and educational attainment as young adults.
We will perform a centrally-based assessment for children with sufficient independence to attend (with or without parents), which includes a neuropsychological assessment, a brain MRI scan, lung function testing, assessment of the cardiovascular system and quantitative sensory testing. For children who have long distances to travel (Scotland, Ireland) we will organise centre-based assessments locally (for example in Edinburgh and Dublin) but may have to miss key aspects of the technology-based investigations. For those dependent on their carers, and because of this unable or unwilling to travel, we will provide a home-based assessment of their functional status.
The results of this study will inform outcomes following extremely preterm birth that have relevance to today's births, as the spectrum and prevalence of disability has not changed over ten years (EPICure 2). At an age of peak physical performance we will identify key areas of outcome that have implications for adult life, that have receded as issues or show continuities through childhood, and to identify target areas for intervention.
We will perform a centrally-based assessment for children with sufficient independence to attend (with or without parents), which includes a neuropsychological assessment, a brain MRI scan, lung function testing, assessment of the cardiovascular system and quantitative sensory testing. For children who have long distances to travel (Scotland, Ireland) we will organise centre-based assessments locally (for example in Edinburgh and Dublin) but may have to miss key aspects of the technology-based investigations. For those dependent on their carers, and because of this unable or unwilling to travel, we will provide a home-based assessment of their functional status.
The results of this study will inform outcomes following extremely preterm birth that have relevance to today's births, as the spectrum and prevalence of disability has not changed over ten years (EPICure 2). At an age of peak physical performance we will identify key areas of outcome that have implications for adult life, that have receded as issues or show continuities through childhood, and to identify target areas for intervention.
Planned Impact
EPICure has already enhanced the knowledge economy around extremely preterm birth raising awareness of the problems faced following intensive care for these babies, influencing policy and practice within the neonatal community, influencing national bodies such as the Nuffield Council on Bioethics and being an important source of information for the Science and Technology Committee's report on the legal gestational age for termination. EPICure 2 is revisiting much of these data, indicating where change is necessary.
We believe that the data in the two studies will benefit:
The academic community - by generating novel research ideas, identifying areas to investigate further, and to generate targets for interventions. We will achieve this through a range of pathways - publications and presentations, open access, awareness through active engagement of the medical and public media and press release collaboration.
Health and education community - understanding the full impact and implications of preterm birth; provision of services and support for families, raising awareness of the ongoing needs and problems of prematurity through education of professionals in health and education, ensuring that resources are available for interventions to support children at home, in the family and at school. Pathways - public lectures to specialty groups, working with educational research teams to determine the optimal way of influencing teachers and teaching styles, web resources and publication in educational journals. Determining risk for cardiovascular and respiratory outcomes will inform adult services and may indicate active management of this group who have relatively little health promotion and surveillance of direct relevance - pathways via media and opinion pieces, web based information to ensure a high profile of information.
Public policy - influencing service design and configuration through the results of EPICure 2; working with Bliss and health economists to evaluate the cost effectiveness of different models of care on the EPICure 2 outcomes - pathways using Bliss to disseminate information and lobby policy makers to move to more appropriate models. With adult outcomes, which ever message evolves - amelioration of or worsening in impairment over adolescence - it is important that public policy makers are aware of the risk benefit of neonatal care and the importance for adult services, through similar pathways.
Public engagement - to raise the public knowledge of the effects of prematurity through work with charitable organisations via lectures for a range of national and local charities over the past 5 years at educational and fundraising events; ensuring the website is effective in promoting the findings of the study and the interpretation of results for the public; ensuring media exposure for results of key results.
We believe that the data in the two studies will benefit:
The academic community - by generating novel research ideas, identifying areas to investigate further, and to generate targets for interventions. We will achieve this through a range of pathways - publications and presentations, open access, awareness through active engagement of the medical and public media and press release collaboration.
Health and education community - understanding the full impact and implications of preterm birth; provision of services and support for families, raising awareness of the ongoing needs and problems of prematurity through education of professionals in health and education, ensuring that resources are available for interventions to support children at home, in the family and at school. Pathways - public lectures to specialty groups, working with educational research teams to determine the optimal way of influencing teachers and teaching styles, web resources and publication in educational journals. Determining risk for cardiovascular and respiratory outcomes will inform adult services and may indicate active management of this group who have relatively little health promotion and surveillance of direct relevance - pathways via media and opinion pieces, web based information to ensure a high profile of information.
Public policy - influencing service design and configuration through the results of EPICure 2; working with Bliss and health economists to evaluate the cost effectiveness of different models of care on the EPICure 2 outcomes - pathways using Bliss to disseminate information and lobby policy makers to move to more appropriate models. With adult outcomes, which ever message evolves - amelioration of or worsening in impairment over adolescence - it is important that public policy makers are aware of the risk benefit of neonatal care and the importance for adult services, through similar pathways.
Public engagement - to raise the public knowledge of the effects of prematurity through work with charitable organisations via lectures for a range of national and local charities over the past 5 years at educational and fundraising events; ensuring the website is effective in promoting the findings of the study and the interpretation of results for the public; ensuring media exposure for results of key results.
Organisations
- University College London (Lead Research Organisation)
- UNIVERSITY OF OXFORD (Collaboration)
- McMaster University (Collaboration)
- University of Melbourne (Collaboration)
- National Institute of Health and Medical Research (INSERM) (Collaboration)
- Karolinska Institute (Collaboration)
- University of Helsinki (Collaboration)
- University of Warwick (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
Publications
Moore T
(2012)
Neurological and developmental outcome in extremely preterm children born in England in 1995 and 2006: the EPICure studies.
in BMJ (Clinical research ed.)
Draper ES
(2012)
An investigation into the reporting and management of late terminations of pregnancy (between 22 +0 and 26 +6 weeks of gestation) within NHS Hospitals in England in 2006: the EPICure preterm cohort study.
in BJOG : an international journal of obstetrics and gynaecology
Gallagher K
(2012)
The attitudes of neonatal nurses towards extremely preterm infants.
in Journal of advanced nursing
Johnson S
(2012)
Assessing educational outcomes in middle childhood: validation of the Teacher Academic Attainment Scale.
in Developmental medicine and child neurology
Bolton CE
(2012)
The EPICure study: association between hemodynamics and lung function at 11 years after extremely preterm birth.
in The Journal of pediatrics
Moore T
(2012)
Screening for autism in extremely preterm infants: problems in interpretation.
in Developmental medicine and child neurology
Marlow N
(2013)
Measuring neurodevelopmental outcome in neonatal trials: a continuing and increasing challenge.
in Archives of disease in childhood. Fetal and neonatal edition
Marlow N
(2013)
Stratifying risk factors for learning problems in very preterm children.
in Developmental medicine and child neurology
Simms V
(2013)
Mathematics difficulties in extremely preterm children: evidence of a specific deficit in basic mathematics processing.
in Pediatric research
Simms V
(2013)
Mathematics difficulties in children born very preterm: current research and future directions.
in Archives of disease in childhood. Fetal and neonatal edition
| Guideline Title | Framework for the management of delivery at extremely low getsational age |
| Description | Evidence base for guidance |
| Geographic Reach | National |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | Work based on the EPICure study underpins the trends in survival and morbidity that has led to major changes in national practice |
| URL | http://www.bapm.or.uk/publications |
| Description | NHS England Service Specification |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | Our data on survival and morbidity following EP birth by place of birth have influenced the recommendation to transfer women at high risk between 22 and 26 weeks of gestation to specialist centres. |
| URL | https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-e/e08/ |
| Description | NICE Guideline - developmental follow up of preterm babies |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Guideline Title | Perinatal Management of Pregnant Women at the Threshold of Infant Viability- the Obstetric Perspective (Scientific Impact Paper No. 41) |
| Description | RCOG Scientific Impact Paper |
| Geographic Reach | National |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | This is the first guidance published concerning the obstetric management of EP births- which has a direct bearing on the chances of survival for the baby. |
| URL | https://www.rcog.org.uk/en/guidelines-research-services/guidelines/sip41/ |
| Description | Interpreted conversations between doctors and parents in prenatal and neonatal care |
| Amount | £9,977 (GBP) |
| Funding ID | 50109431 |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 02/2021 |
| End | 08/2021 |
| Description | NIHR Programme Development Grant |
| Amount | £100,000 (GBP) |
| Funding ID | RP-DG-0611-10006 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2013 |
| End | 01/2014 |
| Description | UCLH EGA Trustees |
| Amount | £15,000 (GBP) |
| Organisation | University College Hospital |
| Department | Special Trustees of University College London Hospital (UCLH) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 03/2015 |
| Title | RECAP |
| Description | The EPICure studies will have its own Node in the RECAP project (Horizon 2020) to facilitate collaboration with other international studies. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | None as yet |
| URL | https://recap-preterm.eu/ |
| Description | Adults born Preterm International Collaboration |
| Organisation | McMaster University |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | We are leading on analysis of psychiatric outcomes following EP birth |
| Collaborator Contribution | Others have proposed and are seeking funding for a range of studies of other aspects of Adult outcomes |
| Impact | None as yet |
| Start Year | 2014 |
| Description | Adults born Preterm International Collaboration |
| Organisation | University of Helsinki |
| Department | Department of Public Health |
| Country | Finland |
| Sector | Academic/University |
| PI Contribution | We are leading on analysis of psychiatric outcomes following EP birth |
| Collaborator Contribution | Others have proposed and are seeking funding for a range of studies of other aspects of Adult outcomes |
| Impact | None as yet |
| Start Year | 2014 |
| Description | Adults born Preterm International Collaboration |
| Organisation | University of Warwick |
| Department | Department of Psychology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We are leading on analysis of psychiatric outcomes following EP birth |
| Collaborator Contribution | Others have proposed and are seeking funding for a range of studies of other aspects of Adult outcomes |
| Impact | None as yet |
| Start Year | 2014 |
| Description | Bavarian Longitudinal Study |
| Organisation | University of Warwick |
| Department | Department of Psychology |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We have developed a series of longitudinal analyses between the two studies |
| Collaborator Contribution | We are contributing equally to the research process |
| Impact | We have published two main papers in Journal of Paediatrics 2015. Further applications for research funding for further work are pending |
| Start Year | 2014 |
| Description | EPIPAGE 2/3E's study |
| Organisation | Karolinska Institute |
| Country | Sweden |
| Sector | Academic/University |
| PI Contribution | Collaborative venture with French Regional Study to compare outcomes across two studies |
| Collaborator Contribution | Both to contribute a PhD student (successful) Now joint study with Swedish EXPRESS cohort underway |
| Impact | PhD complete |
| Start Year | 2013 |
| Description | EPIPAGE 2/3E's study |
| Organisation | National Institute of Health and Medical Research (INSERM) |
| Department | INSERM U897 (Epidemiology and Biostatistics Research Centre) |
| Country | France |
| Sector | Public |
| PI Contribution | Collaborative venture with French Regional Study to compare outcomes across two studies |
| Collaborator Contribution | Both to contribute a PhD student (successful) Now joint study with Swedish EXPRESS cohort underway |
| Impact | PhD complete |
| Start Year | 2013 |
| Description | NPEU |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Joint supervision of new PhD Student |
| Collaborator Contribution | Share supervision and use our data |
| Impact | None as yet |
| Start Year | 2018 |
| Description | TRUFFLE Group |
| Organisation | Imperial College London |
| Department | Imperial College Trust |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Using the experience gained in EPICure we have supported this pas-EU group of fetal medicine specialists to run and deliver a major international trial |
| Collaborator Contribution | The TRUFFLE group have run and collected data as advised |
| Impact | Publications in USOG and the Lancet First stage application for funding from HTA successful |
| Start Year | 2012 |
| Description | University of Melbourne, Australia |
| Organisation | University of Melbourne |
| Country | Australia |
| Sector | Academic/University |
| PI Contribution | We have developed a bilateral IPD analysis using studies in the two countries |
| Collaborator Contribution | The have linked the data and are developing protocols for the analysis |
| Impact | None as yet |
| Start Year | 2015 |
| Description | 1st World Congress on Maternal Fetal Neonatal Medicine - April 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed middle childhood outcomes to large international congress |
| Year(s) Of Engagement Activity | 2017 |
| Description | 25th Anniversary Meeting (keynote), Annual Neonatal Conference, Middlesbrough July 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed EP outcomes and communication with parents |
| Year(s) Of Engagement Activity | 2017 |
| Description | 3 Lectures, IPOKRaTES Meeting, Prague, Czech Republic |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used EPICure data to illustrate outcomes and causal pathways to outcomes in series of seminars to international trainees |
| Year(s) Of Engagement Activity | 2014 |
| Description | 3 Lectures, Miami International Neonatal Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Series of lectures on outcomes and decision making for EP children |
| Year(s) Of Engagement Activity | 2014 |
| Description | 30th Norwegian Perinatal Symposia, Alesund, Norway - November 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used Longitudinal EPICure data to describe changes in neonatal outcomes over 30 years |
| Year(s) Of Engagement Activity | 2017 |
| Description | 4 Lectures IPOKRaTES Meeting Porto |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Seminar on the EP infant |
| Year(s) Of Engagement Activity | 2015 |
| Description | 4 Lectures International Neonatal Conference Abha, KSA |
| 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 | Lectures around preterm outcomes for International conference |
| Year(s) Of Engagement Activity | 2014 |
| Description | 4 Lectures International Neonatal Conference Muscat Oman |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 4 lectures 3 including EPICure data |
| Year(s) Of Engagement Activity | 2013 |
| Description | 4 Lectures, UENPS Conference Athens |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Major CPD conference, organised a seminar on Neonatal outcomes |
| Year(s) Of Engagement Activity | 2014 |
| Description | 4D angiography in the Circle of Willis |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to European MRI group (COST) Europe |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.cost.eu |
| Description | 4D angiography of the Circle of Willis |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation for department symposium London Queens Square |
| Year(s) Of Engagement Activity | 2015 |
| Description | 5th UHS International Meeting, Dubai |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal talk on long term outcomes |
| Year(s) Of Engagement Activity | 2017 |
| Description | Advanced MRI of the fetus and neonate, Centre for the Developing Brain Seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed novel MRI techniques to support our own work and that of our other partner groups in fetal imaging. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Annual Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | The annual newsletter is conceived as an update to be sent too all study participants and their families. This improves retention in the study, participation and understanding of the research process and its timings. |
| Year(s) Of Engagement Activity | Pre-2006,2006,2007,2008,2009,2010,2011,2012,2013,2014 |
| URL | http://www.epicure.ac.uk/parents-newsletter/ |
| Description | Annual neonatal Allied Health Professional study day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Adult outcomes following extremely preterm birth |
| Year(s) Of Engagement Activity | 2019 |
| Description | Assessment of sensory outcomes following early life injury: laboratory and clinical findings |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 10th International Symposium on Paediatric Pain. Seattle, June 2015 |
| Year(s) Of Engagement Activity | 2015 |
| Description | BAPM Annual Conference and Scientific Meeting - in partnership with EBNEO |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Managing Extreme Preterm Birth - The New BAPM Framework for Practice - led a workshop and debate |
| Year(s) Of Engagement Activity | 2019 |
| Description | BAPM Founders Lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | BAPM Founders Lecture entitled "From the cradle to the classroom: Improving educational support for children born preterm" at Perinatal Medicine 2020, the Joint meeting of the British Association of Perinatal Medicine (BAPM), British Maternal and Fetal Medicine Society and The Neonatal Society, 14/12/2020 |
| Year(s) Of Engagement Activity | 2020 |
| Description | BAPM Founders Lecture, Liverpool UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prestigious Annual Lecture |
| Year(s) Of Engagement Activity | 2013 |
| Description | BLISS |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Updated Parent's charity with data from study New leaflet for parents prepared, updated website details they have and added links into our own website |
| Year(s) Of Engagement Activity | 2010 |
| Description | Brain Club Lecture, PAS Washington DC |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Highly prestigious invited lecture |
| Year(s) Of Engagement Activity | 2013 |
| Description | Cardiovascular risk in young adults born extremely preterm |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Presentation at annual Institute meeting |
| Year(s) Of Engagement Activity | 2015 |
| Description | Care of extremely premature babies in England |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Present Institute for Child Health Early Careers Research Group (London, UK) October 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Care of extremely premature babies in England, 1995 to present |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | UCL PhD upgrade presentation Jan 2012 |
| Year(s) Of Engagement Activity | 2009,2012 |
| Description | Connaught Summer Institute in Pain, Sickkids/Univeristy of Toronto. July 2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to international meeting of our research results |
| Year(s) Of Engagement Activity | 2018 |
| Description | Consequences of pain in the neonate |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | New Zealand Pain Society 40th Annual Scientific Meeting. Auckland, March 2015 |
| Year(s) Of Engagement Activity | 2015 |
| Description | Course on Neonatal Outcomes Modena Italy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Overview of EPICure study and implications, requests for collaboration and further studies followed |
| Year(s) Of Engagement Activity | 2016 |
| Description | Departmental Seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Understanding the nature and causes of very preterm children's mathematics learning difficulties: From evidence to intervention." University of Warwick, School of Psychology Seminar Series; 7/3/2019. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Disability team Warwickshire |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | "The long term consequences of preterm birth: What teachers need to know." For IDS Specialist Teachers and the Portage Child Development Advisers and Specialist Teaching Service staff at Warwickshire County Council, Coventry, UK. 15/01/2018. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Does extreme prematurity affect adult brain vessel compliance? A preliminary MRI study. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | ESMRMB conference (Edinburgh) |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.esmrmb.org |
| Description | Does extreme prematurity affect adult brain vessel compliance? A preliminary MRI study. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Brain 2015 conference (Vancouver) |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://brain.kenes.com |
| Description | Does place of birth affect outcomes for extremely premature babies? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Hologic Educational Symposium - educational meeting for obstetricians (Birmingham, UK) May 2013 |
| Year(s) Of Engagement Activity | 2013 |
| Description | Dohad conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | 2nd Global Forum on Women's Health and DOHaD Consequences: title of workshop CONSEQUENCES FOR THE ECONOMY AND SOCIETY 3 April 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | Dublin CP Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Review outcomes during conference on cerebral palsy |
| Year(s) Of Engagement Activity | 2018 |
| Description | Dutch 40th Anniversary Meeting NN Society (Nijmegen) |
| 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 | Session on follow up, integrated with Dutch FUp group |
| Year(s) Of Engagement Activity | 2013 |
| Description | EAPS Congress |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Child and adolescent mental health after preterm birth." 7th Congress of the European Academy of Paediatric Societies (joint biennial meeting of the European Society for Paediatric Research (ESPR), European Society for Paediatric and Neonatal Intensive Care (ESPNIC) and European Academy of Paediatrics (EAP)), Paris, France. |
| Year(s) Of Engagement Activity | 2018 |
| Description | EAPS Congress seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Psychological aspects of the adult preterm." 7th Congress of the European Academy of Paediatric Societies (joint biennial meeting of the European Society for Paediatric Research (ESPR), European Society for Paediatric and Neonatal Intensive Care (ESPNIC) and European Academy of Paediatrics (EAP)), Paris, France. |
| Year(s) Of Engagement Activity | 2018 |
| Description | EAPS Meeting Geneva |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture and two accepted platform presentations at main European meeting around 19 year outcomes |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.paediatrics.kenes.com/scientific-information/scientific-programme#.WMfHGxh0doM |
| Description | EPICure 2: The relationship between condition at birth and neonatal outcomes at discharge from Hospital |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | BAPM Annual General Scientific meeting Cambridge |
| Year(s) Of Engagement Activity | 2015 |
| Description | EPICure 2: The relationship between condition at birth and neonatal outcomes at discharge from Hospital |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | BAPM Annual General Scientific meeting Cambridge |
| Year(s) Of Engagement Activity | 2015 |
| Description | EPICure update |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Presentation for research study team London Queens Square |
| Year(s) Of Engagement Activity | 2011,2015 |
| Description | EPIcure NewsLetter 2014 |
| 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 | Annual newsletter posted to all EPICure study participants and published on line on EPICure Website |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.epicure.ac.uk/parents-newsletter/december-2014/ |
| Description | EPIcure Newsletter 2015 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | EPICure annual newsletter for 2015 posted to individual participants and published on line on EPICure website |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.epicure.ac.uk/parents-newsletter/december-2015/ |
| Description | EU Brussels - Call for Action |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Launched EFCNI Call for Action with European Parliamentarians |
| Year(s) Of Engagement Activity | 2013 |
| Description | Early intervention and diagnosis in paediatric neurodevelopment defects in Brazil - November 2017 (Lecture and Workshop facilitation) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used epicure data to identify need for early intervention in a seminar oriented to improving support services for disabled children in Brazil, sponsored by the Academy of Medical Sciences. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Educational outcomes |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Nov 26th The effects of premature birth on education. Specialist Inclusion Support Service, Service Day, Solihull, UK. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Ethics Conference (Barcelona) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Seminar on decision making for EP infants |
| Year(s) Of Engagement Activity | 2013 |
| Description | European Academy of Paediatric Societies Meeting Paris |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Adult outcomes |
| Year(s) Of Engagement Activity | 2018 |
| Description | Expert Fetal Medicine Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture and discussion about management of EP delivery |
| Year(s) Of Engagement Activity | 2018 |
| Description | Fetal and Neonatal Neurology Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Organisation , chairing and 2 talks in plenary session of the fetal and neonatal neurology conference March 2021 |
| Year(s) Of Engagement Activity | 2021 |
| Description | Fetal/Neonatal Monitoring, Killarney - October 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed how to evaluate outcomes for preterm children |
| Year(s) Of Engagement Activity | 2017 |
| Description | Filming for ARTE programme |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Major EU based documentary on the effects of preterm birth Contacted by several colleagues and responded with published documents |
| Year(s) Of Engagement Activity | |
| Description | Filming for ITN |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Short piece where i was interviewed with 19year old participant of research about the advances in neonatal care subsequent to his birth to be screened in the next month |
| Year(s) Of Engagement Activity | |
| Description | Founders Lecture BAPM Annual Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prestigious Invited Lecture about EPICure and its implications |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.bapm.org/meetings |
| Description | French Neonatal Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | "Have neurodevelopmental outcomes for extremely preterm infants improved over time?" Journées Francophone de Recherches en Néonatologie (French National Neonatal Society Annual conference), Paris, December 14th 2018 |
| Year(s) Of Engagement Activity | 2018 |
| Description | Guardian Podcast |
| 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 | Public/other audiences |
| Results and Impact | Podcast on the extremely preterm child https://www.theguardian.com/theobserver/2006/oct/22/focus.news |
| Year(s) Of Engagement Activity | 2019 |
| Description | Guest Lecture, Neonatal On-Line Training in Europe (NOTE, University of Southampton) |
| 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 | Informal talk and discussion about EP babies and end of life decisions with European Trainees |
| Year(s) Of Engagement Activity | 2015 |
| Description | Hidden toll of being a premature baby |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Interview with Daily Mail newspaper |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.dailymail.co.uk/femail/article-3414833/Hidden-toll-premature-baby-Modern-medicine-helped-... |
| Description | Hunter Medical Research Institute Plenary |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Research Presentation to Hunter Institute, University of Newcastle NSW Australia |
| Year(s) Of Engagement Activity | 2018 |
| Description | INC Virtual symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on measurement of Long term outcomes to International Neonatal Consortium session at Hot Topics |
| Year(s) Of Engagement Activity | 2020 |
| Description | INC activities |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Working with FDA and EMA to develop standardised outcome evaluations for new IMP developmental trials. |
| Year(s) Of Engagement Activity | 2015,2016,2017 |
| URL | https://c-path.org/programs/inc/ |
| Description | ISUOG Lecture London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on Outcomes following EP and FGR birth |
| Year(s) Of Engagement Activity | 2013 |
| Description | Imaging the preterm brain, Otto Wolff Neuroscience Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Set out our new techniques to a large neuroscience group. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Impact of antenatal steroid, tocolysis and caesarean delivery on condition at birth in extremely premature babies |
| 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 | Perinatal Medicine - "Hot Topics" Session (Harrogate, UK) June 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Impact of antenatal steroid, tocolysis and caesarean delivery on condition at birth in extremely premature babies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Institute for Women's Health Annual Day UCL, London May 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Improving educational outcomes for children born preterm |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | [KEYNOTE] Improving educational outcomes for children born preterm: A new approach to intervention. Swedish Neonatal Quality Register Annual meeting March 12-13 2020 Stockholm Prof Sam Johnson used EPICure data to disseminate our work on education |
| Year(s) Of Engagement Activity | 2020 |
| Description | Improving educational outcomes: A new approach to intervention |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prof Johnson Improving educational outcomes: A new approach to intervention. In Symposium on prematurity and long term follow-up. Vrije Universiteit, Amsterdam, Netherlands, 14th October 2019. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Imputation in practice - ESPR Meeting Porto |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Teaching course on Epidemiology - used EPICure experience as vehicle for teaching, excellent feedback and discussions |
| Year(s) Of Engagement Activity | 2013 |
| Description | Investigating increased admissions to neonatal intensive care in England between 1995 and 2006: a data linkage study using Hospital Episode Statistics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited talk to Internal speaker seminar series |
| Year(s) Of Engagement Activity | 2015 |
| Description | Investigation of cardiovascular and respiratory outcomes in young adults born extremely preterm |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | PhD graduate presentation |
| Year(s) Of Engagement Activity | 2015 |
| Description | Invited training session |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | Invited training session entitled "The long term consequences of preterm birth: what teachers need to know" for Early Years practitioners as part of North Tyneside Council Educational Psychology Service's 'Children born preterm - impact on learning' training event, 13/10/2020 |
| Year(s) Of Engagement Activity | 2020 |
| Description | Irish Perinatal Society Meeting, Kilkenny, Ireland - November 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used EPICure data to challenge current policy in the UK and Ireland |
| Year(s) Of Engagement Activity | 2017 |
| Description | Is adult brain vessel compliance affected by extreme prematurity? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | British Chapter ISMRM conference (London) |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.ismrm.org.uk/ |
| Description | Italian Society for Perinatal Medicine Meeting Naples |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal talk about extreme prematurity |
| Year(s) Of Engagement Activity | 2016 |
| Description | Joint European Neonatal Society Congress (JENS) 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk When does a fetus/neonate become a person with human rights? |
| Year(s) Of Engagement Activity | 2019 |
| Description | Joint European Neonatal Society Congress (JENS) 2019 (2) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improving communication with parents |
| Year(s) Of Engagement Activity | 2019 |
| Description | Keynote |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Schools |
| Results and Impact | invited keynote presentation entitled "Preterm Birth Information for Education Professionals: An e-learning resource" for healthcare professional and researchers involved in the Dutch National Neonatal Neurodevelopmental Follow-up Group annual conference, 30/10/2020 |
| Year(s) Of Engagement Activity | 2020 |
| Description | Keynote |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Schools |
| Results and Impact | invited keynote presentation entitled "Improving educational outcomes for children born preterm: A new approach to intervention" at the Swedish Neonatal Quality (SNQ) register meeting (remote conference) 12/03/2020 |
| Year(s) Of Engagement Activity | 2020 |
| Description | Keynote |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | [KEYNOTE] Annual conference of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL), Institute of Mental Health, University of Nottingham, June 26th 2019. Title Improving educational outcomes for children born preterm: From evidence to intervention. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Keynote Lecture Middlesborough Annual International Meeting on Neonatology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Broad lecture on ethics, communication and outcomes. Well received and invited to give two further talks in 2017! |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.southteeslri.co.uk/annual-international-neonatal-conference |
| Description | Keynote on educational outcomes |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | [KEYNOTE] Educational outcomes following premature birth: What teachers need to know" At "When sense makes sense. Educational and developmental outcomes of children born pre-term or with exceptional health needs" conference. 9/5/19. Queen Elizabeth University Hospital, Glasgow, Scotland |
| Year(s) Of Engagement Activity | 2019 |
| Description | Kiev Teaching - Preterm outcomes |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used research data to teach around outcomes |
| Year(s) Of Engagement Activity | 2018 |
| Description | LF Congress Rotterdam, NL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal lecture and Round table discussion about policy for EP births, including communication of risk |
| Year(s) Of Engagement Activity | 2015 |
| Description | Launch of European Standards for Neonatal Care EU Parliament |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Launch of our Standards Project |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://newborn-health-standards.org/ |
| Description | Lecture (Avignon course) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Organiser of second Course - Lecture and debate on brain injury and consequences |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture (Evelina Children's Hospital) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on long term outcomes for EP children |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture (Journée Paris) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal lecture with two other national studies to National Meeting in France |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture (Journée Paris) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed implications of EPICure studies |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture - International Meeting Israel |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Advanced MRI of the fetus and neonate, Shaare Zedek Medical Centre, 24th June 2018, Jerusalem. Update for MRI experts interested in fetal/neonatal MRI used EPICure and neonatal data. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Lecture 1 (Avignon course) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on EPICure 2 |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture 2 (Avignon course) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Methodology seminar |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture Dutch Neonatal Symposium, Maastricht, NL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Challenged Dutch national Policy on EP births |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture International conference (Cardiff) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Achieving Improved Outcomes - invited to speak second year as well received last time - discussed communication at end of life |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture International conference (Dublin) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Achieving Improved Outcomes conference, discussed PEICure 2 results and strategies to improve outcomes |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture SINAPSA, Ljubljana, Slovenia |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture to National Society on EPICure study |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture TRPG meeting (Evelina Children's Hospital) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Place of birth analysis discussed and implications debated |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lecture Thames Valley Network Study day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussions about strategies to improve outcomes |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture Thames Valley Network Study day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed EP birth and decision making |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture, CACE Conference Loughborough |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at Conversation Analysis and Clinical Encounters Meeting |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture, First Congress on Neonatology, Armalov, Poland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Keynote at first Polish Meeting |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture, Freemasons' Charity, Stockholm, Sweden |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Seminar in the presence of HRH the Queen of Sweden on Paediatric Research |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture, KSS Neonatal Network Meeting, Brighton |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion on how to develop follow up policy locally |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture, Nursing meeting Tortworth, Glos. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion of communication of outcomes |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture, S Wales Perinatal Group, Swansea |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on outcomes following fetal growth restriction |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture, SEC Neonatal Network Conference Crawley |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on management of EP babies |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lecture, SEC Neonatal Network Conference Gatwick Airport |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lecture on conversations and EP births |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lecture/seminar Whittington Hospital |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lead debate about decision making at low GA |
| Year(s) Of Engagement Activity | 2013 |
| Description | Lectures (2) ECPM Florence Italy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Major European Perinatal Conference |
| Year(s) Of Engagement Activity | 2014 |
| Description | Lectures (2) GNPI National Meeting Stuttgart, Germany |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Lectures on EP outcomes and organisation of services to support optimal outcomes. Audience welcomed network approach to EP babies |
| Year(s) Of Engagement Activity | 2015 |
| Description | Les Resultats de la premature extreme: est-ce qu'on peut continuer a ameliorer |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited presentation at the Centre Hospitalier Rosemon Neonatal Department Cayenne French Guiana |
| Year(s) Of Engagement Activity | 2015 |
| Description | Lifespan mental health outcomes following preterm birth. Current Issues in Clinical Neuroscience: |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Neonatal Brain. University Medical Centre, Utrecht University, Utrecht, The Netherlands. (included epicure data from 19y F/Up and 11y F/Up) |
| Year(s) Of Engagement Activity | 2017 |
| Description | Long term health of babies born extremely preterm: blood pressure and other outcomes |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Poster presentation to students and staff |
| Year(s) Of Engagement Activity | 2016 |
| Description | Long term outcome of very preterm born infants into adulthood |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | *NEIL PLEASE ADD* |
| Year(s) Of Engagement Activity | 2018 |
| Description | Long term psychological outcomes after extremely preterm birth: Evidence from the EPICure Studies |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Mater Mothers' Hospital Grand Rounds, Brisbane, Australia |
| Year(s) Of Engagement Activity | 2017 |
| Description | Looking beyond IQ in preterm children |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 3rd Summer Conference on Neonatology, Avignon, France |
| Year(s) Of Engagement Activity | 2017 |
| Description | Measuring coritcal neurite-dispersion and perfusion in preterm-born adolescents using multi-modal MRI |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Conference poster presentation |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://cmictig.cs.ucl.ac.uk/research/ib/neonatal-imaging |
| Description | Meeting with the EPIPAGE team Paris |
| 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 | Joint seminar to discuss collaboration between studies, led to approach from us to EPIPAGE for a joint analysis this year (2016) |
| Year(s) Of Engagement Activity | 2014 |
| Description | Multi-modal, Multi-parametric measurement of structure and function in the preterm brain |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at a Departmental seminar |
| Year(s) Of Engagement Activity | 2014 |
| Description | NAHT talk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Schools |
| Results and Impact | The long term consequences of premature birth: What teachers need to know. UK National Association of Head Teachers (NAHT), Leading on SEND across all Schools Conference 2019' Invited presentation, London 3/4/2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | NBS Webinar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Webinar on Adult outcomes following EP birth |
| Year(s) Of Engagement Activity | 2021 |
| Description | NCL Parents group |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | outcomes described to representatives from parent groups to all network hospital invitation to visit other NICUs |
| Year(s) Of Engagement Activity | 2013 |
| Description | NICE Committee Developmental Follow Up of Preterm Babies |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | External invited Expert on NICE committee to develop national guidance around outcome evaluation after preterm birth Extensive use of EPICure data |
| Year(s) Of Engagement Activity | 2015,2016,2017 |
| URL | https://www.nice.org.uk/guidance/indevelopment/gid-cgwave0752 |
| Description | NPEC Study day 2018: Neonatal Care in Ireland, Limerick - January 2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used EPICure data to challenge current policy in the UK and Ireland |
| Year(s) Of Engagement Activity | 2018 |
| Description | NPEU 35th Anniversary Meeting, Oxford |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Celebration of NPEU activity over 35 years |
| Year(s) Of Engagement Activity | 2013 |
| Description | NWLondon Parents group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk and advice on outcomes/leaflet New Leaflet in preparation |
| Year(s) Of Engagement Activity | |
| Description | Neonatal Update - NICE Guidance |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed research base to new guidance on Follow on care |
| Year(s) Of Engagement Activity | 2018 |
| Description | New hope for extremely premature babies |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Brief news report on prematurity narrated by an EPICure@19 study participant with interviews with Professor Marlow Released to coincide with World Prematurity Day |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.channel4.com/news/premature-babies-epicure-disability-ewan-mackay-video |
| Description | Nordic Neonatal Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on Adult outcomes |
| Year(s) Of Engagement Activity | 2021 |
| Description | Nottingham Academic Research Day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used current portfolio to illustrate breadth of research options in Neonatology |
| Year(s) Of Engagement Activity | 2018 |
| Description | Obstetric antecedents of extreme prematurity |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Institute for Women's Health Annual Day - 3 rd prize (UCL, London) May 2012 |
| Year(s) Of Engagement Activity | 2009,2012 |
| Description | Obstetric antecedents of extreme prematurity in England |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | RCPCH Annual Conference - British Association of Perinatal Medicine session (Glasgow, UK) May 2012 |
| Year(s) Of Engagement Activity | 2012 |
| Description | Oral presentation London meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Sylvia Rofael, Timothy McHugh, Rachael Troughton, Joanne Beckmann, David Spratt, Neil Marlow, John Hurst. Airway Microbiome in Adult Survivors of Extremely Preterm Birth (The EPICure Study). Oral Presentation in 7th London Microbiome Meeting; 24th October, 2018, St. Thomas Hospital, London, UK. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Outcomes for children born prematurely |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | MSc Paediatrics and Child Health teaching - Institute for Child Health (UCL, London, UK) June 2011 |
| Year(s) Of Engagement Activity | 2007,2011 |
| Description | Outcomes for extreme prematurity: can we continue to improve? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Undergraduate students |
| Results and Impact | UCLH Neonatal Unit |
| Year(s) Of Engagement Activity | 2014 |
| Description | Outcomes for extreme prematurity: can we continue to improve? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Thames Valley and Wessex Neonatal Network Multiprofessional Clinical Day (UK) February 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | PDNet Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Schools |
| Results and Impact | "The long term consequences of preterm birth: What teachers need to know." [KEYNOTE] PDNet National Conference 2018 'Unlocking potential: The keys to success for learners with physical disability.' King Power Stadium, Leicester, UK. 29/6/18 |
| Year(s) Of Engagement Activity | 2018 |
| Description | PSSL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Prof Indrajee Ameresinghe Oration of the Perinatal Society of Sri Lanka |
| Year(s) Of Engagement Activity | 2021 |
| Description | Pain in early life: acute effects and long-term impact |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Danish Society of Anesthesiology and Intensive Care Medicine Annual Meeting. Copenhagen, Nov 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Participant Advisory group |
| 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 | PAG meeting are intended to engage willing participant and receive feedback on planned study literature and activity to then guide action on the wider study cohort. It provides helpful and important insights on how research activities are perceived by the study subjects and how to change the way research is done to make it more approacheable |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | Pediatric Academic Societies Meeting Baltimore |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Four presentations of preliminary data from EPICure@19 and one from OPPTIMUM. All well received |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.pas-meeting.org |
| Description | Polani Lecture BACD, Birmingham |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Prestigious named lecture. Data from 19 year study very well received |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.bacdis.org.uk/conferences/ |
| Description | Poster presentation at international meeting Kilarney |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Sylvia Rofael, Rachael Troughton, Joanne Beckmann, David Spratt, Timothy D. McHugh, Neil Marlow, John Hurst. Airway Microbiome Profiling in Extremely Preterm Birth Survivors in Early Adulthood (The EPICure Study). Poster Presentation in 7th International Human Microbiome Consortium Meeting (IHMC); 26th -28th June, 2018, Killarney, Ireland. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Premature babies: How 24 week old babies are now able to survive |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Interview with TheTelegraph |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.telegraph.co.uk/women/womens-health/11121592/Premature-babies-How-24-week-old-babies-are-... |
| Description | Preterm Birth prevention and treatment, Parma - November 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed recent improvements in preterm outcomes and signposted reconsideration of policy based around EPICure data |
| Year(s) Of Engagement Activity | 2017 |
| Description | Psychiatric outcomes Neonatal Update, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal lecture, good feedback from conference |
| Year(s) Of Engagement Activity | 2013 |
| Description | Quantitative T2 MRI |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Undergraduate students |
| Results and Impact | Lecture to undergraduate presenting ongoing research |
| Year(s) Of Engagement Activity | 2016 |
| Description | RANM Wurzburg |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture on adult outcomes |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.recent-advances.com/ |
| Description | RCOG World Congress 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Plenary - A View of Extremely Preterm Birth |
| Year(s) Of Engagement Activity | 2019 |
| Description | RCOG World Congress, Liverpool UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal Lecture |
| Year(s) Of Engagement Activity | 2013 |
| Description | Seminar - Dept Psychology Warwick University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Seminar on behavioural outcomes to University Department |
| Year(s) Of Engagement Activity | 2014 |
| Description | Seminar - Outcomes in the eye of the beholder (UCL) |
| 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 | Seminar to discuss EU collaboration in area, Sponsored by ECCF. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Seminar Interventions - Oslo, Norway |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Led discussion of interventions available to improve EP outcomes, great feedback from organisers about stimulation of research in this area |
| Year(s) Of Engagement Activity | 2013 |
| Description | Seminar Outcomes - Oslo, Norway |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Great debate on outcomes and their importance based around EPICure |
| Year(s) Of Engagement Activity | 2013 |
| Description | Seminar, Neonatal Dept Siena, Italy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed outcomes and structure of follow up programmes |
| Year(s) Of Engagement Activity | 2015 |
| Description | Sensory and pain outcomes following preterm birth: the EPICure cohort |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 27th Paediatric Anesthesia Conference, Sickkids, Toronto, Nov 2015 |
| Year(s) Of Engagement Activity | 2011,2015 |
| Description | Sidra Hospital Grand Round, Doha, Qatar - January 2018 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Used comprehensive EPICure data to provide global outcomes for EP children. Already engaged in research in Qatar and this brings the opportunity of new collaborations. |
| Year(s) Of Engagement Activity | 2018 |
| Description | St George's House Consultation on the NHS |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Used the example of EP birth to illustrate the issues in providing critical care and making decisions for the EP baby. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Study website design and maintenance |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | The study has been associated with a website for many years since shortly after the Internet became such an important and valuable means of sharing information and raising awareness. More importantly having a website makes the information accessible to a global audience and not just to the study participants. Increases awareness and interest in the problems associated with prematurity. Provides important information and point of contact for interested parties searching the internet. |
| Year(s) Of Engagement Activity | Pre-2006,2006,2007,2008,2009,2010,2011,2012,2013,2014 |
| URL | http://www.epicure.ac.uk/ |
| Description | Surveys on staffing, infrastructure and activity in English neonatal units: 1997 - 2011 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Bliss neonatal, economic, staffing and clinical outcomes project final presentation (UCL, London) March 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Swiss Follow Up Group |
| 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 | Invited lecturer and sole discussant for Swiss Neonatal Follow Up Network Annual Meeting |
| Year(s) Of Engagement Activity | 2016 |
| Description | TES Podcast |
| 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 | Schools |
| Results and Impact | Podcast and article in Times Educational Supplement (TES) published 22/5 19 to support release of PRISM resource: https://www.tes.com/news/should-teachers-be-told-if-pupil-was-born-preterm |
| Year(s) Of Engagement Activity | 2019 |
| Description | TES article |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Schools |
| Results and Impact | "Asking the premature question" Article in the Times Education Supplement (TES) by Helen Amass, published 16th Nov 2018. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Tackling premature children's difficulties with maths. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Charity event for Action Medical Research |
| Year(s) Of Engagement Activity | 2016 |
| Description | Teachers Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Schools |
| Results and Impact | Invited workshop: Association for Teachers in Psychology, International Psychology Teachers' Conference University of Leicester, 5th - 6th July 2019; Title: Understanding the developmental consequences of premature birth: What teachers need to know |
| Year(s) Of Engagement Activity | 2019 |
| Description | Tensor Spectral Matching of diffusion weighted images |
| 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 | Conference presentation at an International workshop |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.midasjournal.org/browse/publication/961 |
| Description | The long term consequences of premature birth: Implications for education |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Evidence of impact from email from Siobhan O'Donnell, Physical Disabilities Support Service; 9 months post-presentation: "Your presentation raised the difficulties children born prematurely face in school that perhaps I hadn't given much consideration to. We now mention this on our training that we deliver. Teachers must ask to find out the birth history when a child is presenting with difficulties. We have found some schools already ask for this information on their admission forms but other schools were going back to their leadership teams to consider including this on the admission forms. I try to include this information on education health care plans." Evidence of impact from email from Sandra Paddock, Physical Disabilities Support Service; 9 months post-presentation "Settings have certainly changed practice as a consequence of your presentation to us. we discuss some of your findings at our Early years training. Early years had not generally been aware of which children in their setting were born prematurely but now ask this routinely as part of their home visits. This then informs there thinking as to the appropriate provision / activities to provide." |
| Year(s) Of Engagement Activity | 2017 |
| Description | The long term effects of very premature birth: Implications for education |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited seminar School of Psychology Anglia Ruskin University |
| Year(s) Of Engagement Activity | 2015 |
| Description | The outcomes of prematurity. Small Steps Big Changes & Nottingham University Hospitals Neonatal Study Day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | City Hospital Nottingham, UK. For (had many slides with EPICure data). Audience were a new peer workforce, health visiting and early help (children's centres) colleagues. All are part of the "A Better Start" Nottingham's Big Lottery programme, Small Steps Big changes. Evidence of impact - quotes from attendees in feedback "Found Dr Johnsons discussion very interesting and relevant to my role, feel I have learnt from this and will be able to use this in my role"; "I really enjoyed Dr Johnson's lecture - outcomes of prematurity, the knowledge that the implications may be life long and the wide range of emotional, cognitive and social problems. We need to do more about this research as community workers who are assessing children's development"; "Very valuable and interesting insights and information that I will take back and use in my role"; Attendees asked What key messages/learnings will you take away and how will you implement them? "Improved awareness of the impact of premature births long term"; "A good overall understanding of prematurity and the issues that both the babies and the families may face now and in the future"; "Just in general a better understanding of premature babies and the risk factors and development"; "Extra support and time to listen to any families who have had a prem baby"; "That some babies don't catch up, how important making parents are aware of support they have"; "Up to date, factual and statistical knowledge of prematurity, knowing who/where to go for extra info to support families, knowledge of possible effects of prem on long term development, How to help families in a practical way 'prematurity is a risk factor, not an outcome"; "Better understanding what prematurity is. I think that will be easier to talk about it with my families"; "I was amazed about the information concerning the longer term effects that may affect a pre term baby in later life at school. I don't mean the obvious such as vision, hearing or cerebal palsy but the less obvious - being withdrawn, struggling to make friends, lack of social skill etc. And also the fact that some of those babies will never catch up"; "Neonatal children may not all have problems but knowing what problems might occur and how we can help"; "That babies that are born premature struggle with so many different challenges as they go through childhood into adult life"; "- Useful to hear some of the current evidence around preterm babies and impact on educational and development outcomes". |
| Year(s) Of Engagement Activity | 2017 |
| Description | Tizard Lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Neonatal Society Tizard Lecture |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.neonatalsociety.ac.uk/ |
| Description | Trends in neonatal staffing and activity, 1997 - 2011 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Institute for Women's Health Research Student Day (UCL, London ) March 2014 |
| Year(s) Of Engagement Activity | 2014 |
| Description | Trends in the provision of neonatal care in England: changes in patient volume and staffing since 1996. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | Poster Presentation Morgan AS, Marlow N, Bennett CJ, Costeloe KL, Draper ES. Trends in the provision of neonatal care in England: changes in patient volume and staffing since 1996. Institute for Women's Health Research Student Day (UCL, London, UK), 31 March 2014. |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | Trends in the provision of neonatal care in England: changes in patient volume and staffing since 1996. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation Morgan AS, Marlow N, Bennett CJ, Costeloe KL, Draper ES. Trends in the provision of neonatal care in England: changes in patient volume and staffing since 1996. Perinatal Medicine (Harrogate, UK), 9--11 June, 2014. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Trinity College Annual Lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Extremely preterm young adults - fit for the future? |
| Year(s) Of Engagement Activity | 2019 |
| Description | UENPS Meeting Valencia |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Formal talks on long term outcomes |
| Year(s) Of Engagement Activity | 2016 |
| Description | Understanding mathematics learning disabilities following very preterm birth: Implications for intervention |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | keynote presentation national Study day Research to Practice joint neonatal Occupational therapy Physiotherapy, Speech and Language therapy Study day |
| Year(s) Of Engagement Activity | 2012,2015 |
| Description | Understanding the nature and causes of very preterm children's mathematics learning difficulties: Implications for intervention |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 12th Mater Growth and Development Unit Conference, Brisbane, Australia |
| Year(s) Of Engagement Activity | 2017 |
| Description | Understanding very preterm children's difficulties with mathematics: Implications for intervention. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Centre for Early Brain Development, Norwegian University of Science and Technology, Trondheim, Norway |
| Year(s) Of Engagement Activity | 2017 |
| Description | Use of social networks |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | We started to use popular social networks such as FaceBook and Twitter to engage the young people in our study and their families. We post frequent updates, relevant images, events, media appeals etc Keeps the study participants engaged and informed and reaches a world wide audience to increase awareness of issues associated with extreme premature birth |
| Year(s) Of Engagement Activity | 2012,2013,2014 |
| URL | https://www.facebook.com/epicurestudy |
| Description | Web talk - PERIPREM |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on BAPM framework including EPICure and Communication data to regional QIP |
| Year(s) Of Engagement Activity | 2020 |
| Description | West Midlands Review Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Used EPICure data to illustrate regional variation in outcomes and long term consequences of reorganisation of services |
| Year(s) Of Engagement Activity | 2016 |
| Description | World Congress MFNM |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2nd World Congress on Maternal fetal Neonatal Medicine PLENARY SESSION 1: INTERVENTIONS WHICH MATTER 5 April 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | World congressMFNM (2) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2nd World Congress on Maternal fetal Neonatal Medicine PLENARY SESSION 2: THE CHALLENGE OF IUGR FETUS AND NEWBORN 6 April 2019 |
| Year(s) Of Engagement Activity | 2019 |
| Description | jENS conference, Venice - November 2017 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussed adult outcomes at very large international meeting |
| Year(s) Of Engagement Activity | 2017 |