Public participation in child health: the Healthy Infants and Children Clinical Research Program (HICCUP).

backgroundPediatric research often requires healthy controls. We established and evaluated a population-based registry that facilitates research by connecting families with opportunities.

methodsChildren 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.

resultsIn 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.

conclusionsFamilies 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.