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Public participation in child health: the Healthy Infants and Children Clinical Research Program (HICCUP)
Nicole Ruest1,2, Amalia Floer3, Ashton Chugh3,4
1Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Canada. ntruest@ucalgary.ca.
Insights
A registry successfully connected families with pediatric research opportunities, demonstrating that families are eager to participate in studies. This initiative enhances child health research by facilitating diverse, high-quality studies.
Area of Science:
- Pediatric Health Research
- Clinical Trial Recruitment
- Population Health Studies
Background:
- Healthy controls are crucial for rigorous pediatric research.
- A population-based registry was established to connect families with research opportunities.
- Existing healthy control programs, especially in pediatrics, are insufficient.
Purpose of the Study:
- To establish and evaluate a registry facilitating pediatric research participation.
- To assess the effectiveness of a registry in matching healthy children with research studies.
- To understand family willingness to engage in research over time.
Main Methods:
- Online and in-hospital recruitment of families and children.
- Self-completed intake forms detailing demographics and commitment levels.
- Online researcher applications with study details; mixed-methods analysis of evaluation surveys.
Main Results:
- 801 participants enrolled over 10 years, contributing to 68 studies.
- 61% of families volunteered for high or very high commitment studies.
- 85% of families would recommend the registry; researchers reported increased grant success.
Conclusions:
- Families are willing to participate in research, even with significant time commitments.
- Enabling participation through registries enhances child health research quality and diversity.
- The registry serves as a model for effective control matching in pediatric studies.
Background:
Pediatric research often requires healthy controls. We established and evaluated a population-based registry that facilitates research by connecting families with opportunities.
Methods:
Children and parents were recruited online and through in-hospital advertising. Families self-completed intake forms, including demographics, types of research and commitment level. Researchers seeking healthy participants applied online, providing scientific rationale, ethics approval, participant criteria, and commitment required. Participants were matched with requests. Anonymous evaluation surveys were emailed to participants and researchers. A mixed-methods analysis, including descriptive statistics and a thematic analysis, was completed.
Results:
In 10 years, 801 participants enrolled, and 68 studies recruited. Studies required low (8), medium (27), high (23), or very high (10) commitment. The majority (61%) volunteered for high or very high commitments. Study recruitment was 41%. Evaluation surveys were completed by 103 families (81% received a request, 80% of those participated in a study). Most (85%) would recommend HICCUP to other families. Researchers (33) represented 8 departments and were equally divided into early, mid, and late-career. Researchers agreed ( > 90%) that HICCUP increased chances of grant success and would recommend the program.
Conclusions:
Families want to engage in research. Enabling participation enhances child health research by facilitating diverse studies at minimal cost.
Impact:
Despite their importance for methodologically rigorous research, there is a lack of healthy control programs, particularly in pediatrics. The program described provides an example and model for effective control matching in child health studies. The program has demonstrated that enabling research participation enhances child health research by facilitating high quality studies in various fields in a range of study designs, generating evidence to improve health outcomes. Families want to participate in research and are willing to contribute to many studies over time despite the potential burden and time requirements.
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