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.

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.

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.

Publications

10 25 50
 
Description EFCNI White Paper
Geographic Reach Asia 
Policy Influence Type Citation in other policy documents
Impact Major paper on the care needs of the preterm infant in association with World Prematurity Day
URL http://www.efcni.org
 
Description EU Forums - ECFNI
Geographic Reach Asia 
Policy Influence Type Participation in a national consultation
Impact We have established the priority within the EU for perinatal care as a health priority and research priority - Neonatal and perinatal medicine a focus of the next Horizon 2020 awards. Published two policy documents form this work and presented twice to EU meetings to promote the issue of preterm birth
 
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/
 
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 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 London 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,
URL http://www.epicure.ac.uk/parents-newsletter/
 
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 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 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 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/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 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 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 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 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 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 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 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 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 Discussed implications of EPICure studies
Year(s) Of Engagement Activity 2015
 
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 - 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 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 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 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 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,
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 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 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 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 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 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 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 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 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