A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies.
Emily van BlankensteinAlice AvelineCheryl BattersbyPublished in: PloS one (2024)
We will include babies who received care in neonatal units in England and Wales, born between 2007-2020 with a gestational age below 32 weeks (approximately 100,000), and/or born between 2012-2020 (all gestations) with any of six surgical conditions: necrotising enterocolitis, Hirschsprung's 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.
Keyphrases
- gestational age
- healthcare
- quality improvement
- birth weight
- preterm birth
- public health
- mental health
- patient safety
- health information
- low birth weight
- genome wide
- intensive care unit
- randomized controlled trial
- type diabetes
- electronic health record
- clinical practice
- emergency department
- physical activity
- human health
- risk factors
- social media
- health promotion
- dna methylation
- risk assessment
- pain management
- hiv infected
- skeletal muscle
- ejection fraction
- affordable care act