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Updated: Dec 12, 2025
Preterm EEG: A Multimodal Neurophysiological Protocol
Published on: February 18, 2012
Pilot study to establish a prospective neonatal cohort: Study of Preterm Infants and Neurodevelopmental Genes
Hilary S Wong1, Lucinda Hopkins2, Michael C O'Donovan2
1Department of Paediatrics, University of Cambridge School, Cambridge, Cambridgeshire, UK.
Insights
This study developed an efficient method to collect genetic and clinical data from very preterm infants. This approach enables future research into the links between preterm birth, genetics, and later health outcomes.
Area of Science:
- Neonatal Research
- Genetics
- Neuropsychiatric Disorders
Background:
- Preterm birth and genetic risk factors are linked to later neuropsychiatric disorders.
- Understanding these links requires large-scale genetic studies of very preterm infants.
- A streamlined approach is needed for efficient cohort establishment.
Purpose of the Study:
- To describe a streamlined study approach for establishing a cohort of very preterm infants.
- To enable efficient collection of biological and clinical data for future research.
- To investigate the interrelationships between genetic risk variants and preterm birth.
Main Methods:
- Recruited 848 very preterm infants and their families from 60 English neonatal units within one year.
- Collected blood samples and extracted clinical data from the National Neonatal Research Database.
- Achieved high rates of consent for future data linkage and recall.
Main Results:
- Successfully established a cohort of 848 very preterm infants.
- Completed genotyping for 97.9% of family trios.
- Obtained consent for future data linkage from 90.1% of parents.
Conclusions:
- Demonstrated the feasibility and acceptability of streamlined data collection strategies.
- Provided a template for cost-effective and efficient future cohort development.
- Facilitated future research on preterm birth, genetics, and neuropsychiatric disorders.
Background:
Genetic risk variants and preterm birth are early and potent risk factors for later neuropsychiatric disorders. To understand the interrelationships between these factors, a large-scale genetic study of very preterm (VPT, <32 weeks gestation) infants with prospective follow-up is required. In this paper, we describe a streamlined study approach, using efficient processes for biological and clinical data collection, to feasibly establish such a cohort.
Methods:
We sought to recruit 500 VPT families within a 1 year period from neonatal units. Treating clinical teams recruited eligible participants, obtained parent consent, collected blood samples and posted specimens to the research laboratory. We extracted all clinical data from the National Neonatal Research Database, an existing UK resource that captures daily patient-level data on all VPT infants.
Results:
Between May 2017 and June 2018, we established a cohort of 848 VPT infants and their parents from 60 English neonatal units. The study population (median (IQR), gestation: 28.9 (26-30) weeks; birth weight: 1120 (886-1420) g) represented 18.9% of eligible infants born at the study sites during the recruitment period (n=4491). From the subset of 521 complete family trios, we successfully completed genotyping for 510 (97.9%) trios. Of the original 883 infants whose parents consented to participate, the parents of 796 (90.1%) infants agreed to future data linkage and 794 (89.9%) agreed to be recalled.
Conclusion:
We demonstrate the feasibility and acceptability of streamlined strategies for genetic, neonatal and longitudinal data collection and provide a template for future cost-effective and efficient cohort development.
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