Disability Data Collection and Analysis

Involving people with disabilities and caregivers in data interpretation was identified as a strategy to improve the validity and relevance of clinical findings. Best practices for data collection include providing alternative comprehension tools such as easy-read formats, video, visual aids, and plain language, along with flexible or virtual scheduling. Five documents emphasized the need to use standardized tools that capture disability status as a demographic variable to avoid underreporting across disability populations. Five documents recommended pre-specifying subgroup analyses by disability status in trial protocols to reveal differential effects across underrepresented populations.