Stakeholder perspectives on an adult cerebral palsy community registry: A qualitative study.

Abstract

Background: The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registry. However, it requires increased enrollment and diversity of participants to produce more generalizable conclusions.

Objective: To identify stakeholder perspectives about the barriers and facilitators to enrollment in the CPRN Community Registry, strategies to enhance recruitment efforts, and important questions for the registry.

Methods: Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. Focus groups explored perspectives about motivations for registry participation, barriers and facilitators to participation, and strategies for increasing and enhancing diversity of enrollment.

Results: Four focus groups were conducted (20 participants with lived experience; 10 clinical investigators; 9 community leaders). All participants valued the information provided by the registry and felt that ongoing data collection was important. Barriers and related facilitators to participation include benefits of participation, awareness, accessibility, and collaboration with community and clinical partners. Adults with lived experience seek more precisely defined health and function outcomes for adults with CP.

Conclusions: Adults with lived experience, clinical investigators, and community leaders identified barriers and facilitators to participation in a patient-reported registry and important questions. This study revealed that communicating a direct benefit to the participant, improved visibility and accessibility, leveraging collaboration with clinical and community partners, and answering more precise research questions could promote enrollment.