{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T04:00:51Z","timestamp":1784088051858,"version":"3.55.0"},"reference-count":38,"publisher":"Public Library of Science (PLoS)","issue":"7","license":[{"start":{"date-parts":[[2024,7,16]],"date-time":"2024-07-16T00:00:00Z","timestamp":1721088000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR300617"],"award-info":[{"award-number":["NIHR300617"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n<jats:title>Introduction<\/jats:title>\n<jats:p>Early-life medical and surgical interventions in babies born preterm and\/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of interventions is complex, expensive, and burdensome to families. Linkage of routinely collected data offers a feasible and cost-effective solution. The NeoWONDER research programme aims to describe the short and long-term health and educational outcomes for babies born preterm and\/or with surgical conditions and evaluate the impact of neonatal care and interventions on later health and educational outcomes.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Methods and analysis<\/jats:title>\n<jats:p>We will include babies who received care in neonatal units in England and Wales, born between 2007\u20132020 with a gestational age below 32 weeks (approximately 100,000), and\/or born between 2012\u20132020 (all gestations) with any of six surgical conditions: necrotising enterocolitis, Hirschsprung\u2019s disease, gastroschisis, oesophageal atresia, congenital diaphragmatic hernia, and posterior urethral valves (approximately 8,000). A detailed list of surgical condition codes is shown in S3 File. We will obtain long-term health and education outcomes through linkage of the National Neonatal Research Database, which contains routine data for all babies admitted to NHS neonatal units, to other existing health and educational datasets. For England, these are: Hospital Episode Statistics, the Office for National Statistics, Mental Health Services Dataset, Paediatric Intensive Care Audit Network, National Pupil Database; and for Wales, the Secure Anonymised Information Linkage databank. Analysis will be undertaken on de-identified linked datasets. Outcomes of interest for health include mortality, hospital admissions, diagnoses indicative of neurodisability and\/or chronic illness, health care utilisation; and for education are attainment (using national curriculum assessments), school absence and special educational needs status.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0305113","type":"journal-article","created":{"date-parts":[[2024,7,16]],"date-time":"2024-07-16T17:30:15Z","timestamp":1721151015000},"page":"e0305113","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":8,"title":["A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies"],"prefix":"10.1371","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2340-1507","authenticated-orcid":true,"given":"Emily","family":"van Blankenstein","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-3862-3096","authenticated-orcid":true,"given":"Alice","family":"Aveline","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl","family":"Battersby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2024,7,16]]},"reference":[{"key":"pone.0305113.ref001","article-title":"Survival of very preterm infants admitted to neonatal care in England 2008\u20132014: time trends and regional variation.","author":"S Santhakumaran","year":"2017","journal-title":"Archives of Disease in Childhood\u2014Fetal and Neonatal Edition."},{"key":"pone.0305113.ref002","doi-asserted-by":"crossref","first-page":"e7961","DOI":"10.1136\/bmj.e7961","article-title":"Neurological and developmental outcome in extremely preterm 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Raju","year":"2017","journal-title":"Acta Paediatrica"},{"issue":"5","key":"pone.0305113.ref009","doi-asserted-by":"crossref","first-page":"e0198083","DOI":"10.1371\/journal.pone.0198083","article-title":"The impact of prematurity and maternal socioeconomic status and education level on achievement-test scores up to 8th grade.","volume":"13","author":"NO ElHassan","year":"2018","journal-title":"PLoS One"},{"key":"pone.0305113.ref010","article-title":"Effect modification of perinatal exposure to air pollution and childhood asthma incidence","author":"E Lavigne","year":"2018","journal-title":"The European respiratory journal"},{"issue":"7","key":"pone.0305113.ref011","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1111\/j.1746-1561.2005.00034.x","article-title":"Chronic Health Conditions and Student Performance at School.","volume":"75","author":"H Taras","year":"2005","journal-title":"J Sch 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Health-related quality of life and its determinants in children and adolescents born with oesophageal atresia","volume":"99","author":"M Peetsold","year":"2010","journal-title":"Acta Paediatr"},{"key":"pone.0305113.ref015","first-page":"16","article-title":"Health-related quality of life in children and adolescents with congenital diaphragmatic hernia: A crosssectional study.","author":"K Bojanic","year":"2018","journal-title":"Health and Quality of Life Outcomes."},{"issue":"12","key":"pone.0305113.ref016","doi-asserted-by":"crossref","first-page":"2001","DOI":"10.1016\/j.jpedsurg.2017.08.036","article-title":"The bowel function and quality of life of Hirschsprung disease patients who have reached 18 years of age or older\u2014the long-term outcomes after undergoing the transabdominal soave procedure","volume":"52","author":"S Onishi","year":"2017","journal-title":"J Pediatr Surg"},{"key":"pone.0305113.ref017","author":"Cochrane Neonatal Reviews","year":"2018","journal-title":"Gaps in research"},{"key":"pone.0305113.ref018","unstructured":"ISRCTN registry. BMC [Available from: https:\/\/www.isrctn.com\/]"},{"key":"pone.0305113.ref019","article-title":"Inconsistent outcome reporting in large neonatal trials: a systematic review.","author":"JWH Webbe","journal-title":"Archives of Disease in Childhood\u2014Fetal and Neonatal Edition."},{"issue":"6","key":"pone.0305113.ref020","doi-asserted-by":"crossref","first-page":"F554","DOI":"10.1136\/archdischild-2012-302970","article-title":"Measuring neurodevelopmental outcome in neonatal trials: a continuing and increasing challenge.","volume":"98","author":"N. 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[data series]. 2nd Release","author":"Department for Education","year":"2019","journal-title":"UK Data Service."},{"key":"pone.0305113.ref028","article-title":"SAIL datasets","author":"Secure Anonymised Information Linkage","year":"2020"},{"key":"pone.0305113.ref029","article-title":"Digital Health and Care Wales","author":"Digital Health and Care Wales","year":"2024","journal-title":"January"},{"key":"pone.0305113.ref030","article-title":"Personal Demographic Service (PDS)","author":"NHS Digital"},{"key":"pone.0305113.ref031","article-title":"NeoWONDER Information Resources: Videos","author":"NeoWONDER"},{"key":"pone.0305113.ref032","article-title":"Accessing secure research data as an accredited researcher","author":"Office for National Statistics"},{"issue":"100","key":"pone.0305113.ref033","doi-asserted-by":"crossref","first-page":"196","DOI":"10.1016\/j.jbi.2014.01.003","article-title":"A case study of the Secure Anonymous Information Linkage (SAIL) Gateway: a privacy-protecting remote access system for health-related research and evaluation.","volume":"50","author":"KH Jones","year":"2014","journal-title":"J Biomed Inform"},{"key":"pone.0305113.ref034","article-title":"NeoWONDER Information Resources: Information Sheets.","author":"NeoWONDER","year":"2021"},{"key":"pone.0305113.ref035","article-title":"Information for Parents and Carers","author":"Neonatal Data Analysis Unit, Imperial College London","year":"2020"},{"key":"pone.0305113.ref036","article-title":"National Data Opt-out","author":"NHS Digital"},{"key":"pone.0305113.ref037","volume-title":"Improving the recording of ethnicity in health datasets","author":"T Bignall","year":"2022"},{"key":"pone.0305113.ref038","article-title":"Bliss: for babies born premature or sick","author":"Bliss","year":"2024"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0305113","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,16]],"date-time":"2024-07-16T17:30:35Z","timestamp":1721151035000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0305113"}},"subtitle":[],"editor":[{"given":"Johanna","family":"Pruller","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2024,7,16]]},"references-count":38,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2024,7,16]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0305113","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,7,16]]}}}