800 - Public Engagement in Child Health: The Healthy Infants and Children Clinical Research Program (HICCUP)

Publication Number: 800.6150

Nicole Romanow, University of Calgary, Calgary, AB, Canada; Amalia Floer, University of Calgary/Alberta Children's Hospital/CPSP, Calgary, AB, Canada; Ashton Chugh, University of Calgary, Calgary, AB, Canada; Adam Kirton, University of Calgary, Calgary, AB, Canada

Background: Effective pediatric research often requires healthy controls. The diverse effects of age and development are paramount and a challenge to control matching. Yet, healthy control programs are lacking.

Objective: Establish and evaluate a population-based registry that facilitates research by connecting families with opportunities.

Design/Methods: Children 0-18 years old and their parents were recruited via online and in-hospital advertising. Interested families self-completed intake forms including demographic information, types of research and commitment level. To connect participants with studies recruiting healthy participants, researchers applied online, providing scientific rationale, ethics approval, timeline, recruitment plan, inclusion/exclusion criteria and the requested commitment level. Following approval, a coordinator screened the database to match participants with requests, providing researchers with a list of potential participants. For program evaluation, anonymous surveys were emailed to participants and researchers, who also submitted recruitment data. A mixed-methods analysis including descriptive statistics and a thematic analysis was completed.

Results: In 10 years, 801 participants enrolled and 68 studies recruited through HICCUP. Studies required low (8), medium (27), high (23), or very high (10) commitment. Among participants, 67 chose low, 242 medium, 256 high and 236 very high willingness to commit. Overall study recruitment success was 41%. High and very high commitment study recruitment was 39%. Evaluation surveys were completed by 103 participants, 97% of whom were parents. Eighty-one percent had received a request and 80% of those participated in a study. The most common reason (37%) for declining was being too busy. Over 80% of participants agreed the commitment level, expectations and ease of participation reflected their initial interest, and 85% would recommend HICCUP to other families. Researchers who responded (33) represented 8 departments and were a mix of early-career (1-5 years, 36%), mid-career (6-15 years, 34%) and late-career (>15 years, 30%). Various study designs included observational (42%), interventional (28%), qualitative (19%) and quality improvement (10%). Over 90% thought HICCUP increased chances of grant success, 86% would use it again and 98% would recommend HICCUP.

Conclusion(s): Families want to engage in research. Enabling 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.