519 - Updating How We Ask Demographic Questions with Autism Clinical Research Participants in a Multinational Autism Research Registry

Poster Number: 519
Publication Number: 519.116

Rosalind Usher, The Children's Hospital of Philadelphia, PHILADELPHIA, PA, United States; Kristn Currans, CCHMC, Cincinnati, OH, United States; Kate E. Wallis, Perelman School of Medicine at the University of Pennsylvania, PHILADELPHIA, PA, United States; Amanda Bennett, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Judith S. Miller, Children's Hospital of Philadelphia -, Philadelphia, PA, United States

Background: Racial, ethnic, and gender disparities in research participation affect our understanding of autism spectrum disorder. Minoritized groups voice concerns about incomplete representation in standard demographic form options. However, NIH reporting standards for human subjects research on race/ethnicity has not been updated since 1997, and standards for gender are not established. The Autism Care Network is a 20-site multinational research partnership with a focus on engaging families, clinicians, and researchers in interventions to improve health outcomes. Currently, each site collects demographic information with a form based on NIH criteria. In 2021, the network voiced interest in updating this form to allow for more inclusive language and comprehensive information about participants.

Objective: 1. Describe the process of updating demographic questions and response options.
2. Evaluate the feasibility and acceptability of an updated demographic form to registry participants and network partners.
3. Evaluate the feasibility and acceptability of this updated form to families outside this autism research registry.

Design/Methods: An updated demographic form was drafted utilizing stakeholder feedback in an iterative PDSA cycle approach. Feasibility and acceptability of this form update were then evaluated through quantitative and qualitative caregiver feedback at two network sites, with purposive recruitment of families from ethnic, racial, or gender majority and minority backgrounds.

Results: The updated form increased the number of options available for race and ethnicity from 8 to 26 and added options and definitions for gender identity. 236 families provided feedback on this updated form. 32% of respondents were from non-white or multiple race groups. 90% of respondents felt the updated survey described their child either well or very well. 99% of respondents rated the updated form same or better than the original. 97% of respondents rated the updated survey both feasible and acceptable.

Conclusion(s): Despite initial concerns that an updated form with more response options would be viewed as a burden, we found high levels of feasibility and acceptability. This project highlights the importance of diverse stakeholder feedback when designing forms used for clinical research. A future direction of this project would be to identify how well the updated form helps researchers identify demographic groups that are or are not well represented in their research samples. This could, in turn, lead to recruitment and study procedures that support participation from groups historically under-represented in research.