Multi-Collaborator Engagement to Identify Research Priorities for Early Intervention in Cerebral Palsy

Area of Science:

• Neurology
• Pediatrics
• Rehabilitation Medicine

Background:

• Clinical practice guidelines for early cerebral palsy (CP) diagnosis and treatment are established but inconsistently implemented.
• Care settings face challenges in applying evidence-based practices for CP.

Purpose of the Study:

• Identify key research priorities for early CP diagnosis and treatment.
• Develop an actionable framework for addressing these priorities through consensus building.

Main Methods:

• Surveying 97 adult participants, including 42 with lived experience of CP, on research topic importance.
• Conducting focus groups to refine priorities and a follow-up survey for validation.

Main Results:

• Six actionable priorities: improved diagnosis communication, early referrals, interdisciplinary collaboration, inclusive training, scaled therapies, social support, and policy advocacy.
• A research framework was developed focusing on education, research expansion, and policy advocacy.

Conclusions:

• Comprehensive, compassionate care is crucial for families with a CP diagnosis.
• Key priorities include early detection, multidisciplinary teams, and evidence-based interventions.
• The framework supports future patient-centered clinical effectiveness research.