Purpose: Identify priorities for adult cerebral palsy (CP) research by engaging individuals with lived experience, clinical investigators, and community leaders. Materials and 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. We explored research priorities among three research areas identified a priori: bone health, kidney health, and preventive care. Results: We conducted four focus groups (20 participants with lived experience; 10 clinical investigators; 9 community leaders). Most participants felt all topic areas were very important, though preventive care emerged as the top priority. We identified three overarching themes that cut across the various research areas discussed: patient and provider knowledge gaps; a precision medicine approach for adult CP care; and the need to address ableism. Conclusions: Adults with CP face unique healthcare needs and risks as they age, and the evidence base to guide their care lags significantly behind. Our study identified preventive care as the top research priority for the adult CP research agenda. Next steps in this line of research should focus on interventions to facilitate primary and preventive care interactions for adults with CP.

This work was supported by the Cerebral Palsy Alliance Research Foundation (CPARF) who funded an Accelerator Award for work within the Cerebral Palsy Research Network. While Jocelyn Cohen is affiliated with the Cerebral Palsy Alliance Research Foundation (CPARF), she did not participate in grant review or funding decisions. The CPARF grant and funding committees of CPARF did not participate in the study design, data collection or analysis, or manuscript preparation. No other competing interests to declare.

This study was funded by the Cerebral Palsy Alliance Research Foundation (CPARF) who funded an Accelerator Award for work within the Cerebral Palsy Research Network. The funder had no role in determining the funding, design, implementation or interpretation of the findings.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The Colorado Multiple Institutional Review Board of the University of Colorado Anschutz Medical Campus waived ethical approval for this work (Protocol #23-1653).

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The data that support the findings of this study are available from the corresponding author upon reasonable request.