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Recommendations for data collection in cohort studies of preterm born individuals - The RECAP Preterm Core Dataset
Charlotte Powell1, Deborah Bamber1, Helen E Collins1
1Department of Population Health Sciences, George Davies Centre, University of Leicester, Leicester, UK.
Insights
A new core dataset standardizes data collection for preterm birth studies, improving health outcome tracking from infancy to adulthood. This standardized approach facilitates international data sharing and research harmonization for better preterm infant care.
Area of Science:
- Perinatal epidemiology
- Longitudinal cohort studies
- Developmental outcomes research
Background:
- Preterm birth (before 37 weeks gestation) is linked to poorer health and developmental outcomes.
- Existing preterm birth study guidelines lack scope, consensus, or stakeholder input.
- Standardized data collection is crucial for pooling and harmonizing global research.
Purpose of the Study:
- To establish a comprehensive Core Dataset for longitudinal cohort studies of preterm birth.
- To create a standardized framework for data collection in preterm birth research.
Main Methods:
- Systematic review of existing core outcome sets and expert scoping exercise.
- Modified Delphi process with three stakeholder groups (project partners, external experts, lived experience individuals).
- Two-stage, three-round Delphi process utilizing a 9-point Likert scale for variable importance.
Main Results:
- Generated an initial list of 140 data items, refined to 160 consensus data items.
- 96 participants from 22 countries contributed, including 29% with lived experience.
- Consensus reached on 160 data items spanning antenatal care to adult outcomes.
Conclusions:
- A 160-item core dataset has been developed for preterm birth longitudinal studies.
- This dataset will standardize data collection and facilitate international data pooling and harmonization.
- Implementation will enhance research comparability and advance understanding of preterm birth outcomes.
Background:
Preterm birth (before 37 completed weeks of gestation) is associated with an increased risk of adverse health and developmental outcomes relative to birth at term. Existing guidelines for data collection in cohort studies of individuals born preterm are either limited in scope, have not been developed using formal consensus methodology, or did not involve a range of stakeholders in their development. Recommendations meeting these criteria would facilitate data pooling and harmonisation across studies.
Objectives:
To develop a Core Dataset for use in longitudinal cohort studies of individuals born preterm.
Methods:
This work was carried out as part of the RECAP Preterm project. A systematic review of variables included in existing core outcome sets was combined with a scoping exercise conducted with experts on preterm birth. The results were used to generate a draft core dataset. A modified Delphi process was implemented using two stages with three rounds each. Three stakeholder groups participated: RECAP Preterm project partners; external experts in the field; people with lived experience of preterm birth. The Delphi used a 9-point Likert scale. Higher values indicated greater importance for inclusion. Participants also suggested additional variables they considered important for inclusion which were voted on in later rounds.
Results:
An initial list of 140 data items was generated. Ninety-six participants across 22 countries participated in the Delphi, of which 29% were individuals with lived experience of preterm birth. Consensus was reached on 160 data items covering Antenatal and Birth Information, Neonatal Care, Mortality, Administrative Information, Organisational Level Information, Socio-economic and Demographic information, Physical Health, Education and Learning, Neurodevelopmental Outcomes, Social, Lifestyle and Leisure, Healthcare Utilisation and Quality of Life.
Conclusions:
This core dataset includes 160 data items covering antenatal care through outcomes in adulthood. Its use will guide data collection in new studies and facilitate pooling and harmonisation of existing data internationally.
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