Parent and patient views on data linkage in preterm babies
Research type
Research Study
Full title
Parent and patient perspectives on linkage between existing data to evaluate long-term health and wellbeing of preterm babies
IRAS ID
291612
Contact name
Cheryl Battersby
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
In the UK each year, around 8,000 babies are born very preterm before 32 weeks (more than 2 months early). They require specialised care in neonatal units and are at risk of life-long disability and health problems. In England, the societal cost to age 18 is around £2.5 billion. Survival of the most premature babies born before 26 weeks has improved from 40% in 1995 to 56% in 2012 but rates of disability remain unchanged. \n\nAs survival continues to improve, improving long-term outcomes is a national priority. To do this, long-term data are needed to evaluate the long-term impact of neonatal interventions. However, the major obstacle is obtaining this information, which is very complex and expensive. As a result, we have no information about the progress of very preterm babies born during the last decade. Without this information, it is difficult to know whether and how things can be done differently in neonatal units to improve longer term outcomes. \n\nThe UK is world-leading in having a repository of data from all neonatal units (over 180) held securely in the National Neonatal Research Database (NNRD). Detailed data include breathing and feeding support provided to each baby every day. neoWONDER aims to link the NNRD to other existing health and educational data for around 90,000 very preterm children born in England and Wales since 2007. \n\nneoWONDER is a 5-year research programme funded by the National Institute for Health Research and stands for ‘neonatal Whole population data linkage to improve lifelong health and wellbeing of preterm babies’. This proposed study is part of the first workstream and involves conducting a national survey and 1:1 interviews to seek the views of parents, patients and the public to ensure there is public support for the proposed research questions and methods. The survey has been developed with parents and ex-patients following a series of focus groups. The findings of the survey and interviews will be used in an application to the Confidential Advisory Group (CAG) seeking permission for data linkage.\n
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
20/YH/0330
Date of REC Opinion
11 Dec 2020
REC opinion
Further Information Favourable Opinion