DARE: Developing Arthrogryposis Recommendations for Evidence

Theme: Evidence-Based Clinical Practice & Implementation Science

The DARE project involves the creation and implementation of rehabilitation guidelines for AMC using a rigorous, patient-engaged methodology.

The guidelines were developed through:
• Five major scoping reviews identifying evidence gaps in self-care, mobility, pain, muscle and joint function, and psychosocial wellbeing.
• International expert panels of orthopedists, physiatrists, occupational and physical therapists, social workers, and individuals with AMC and their families.
• The GRADE framework, adapted for limited rare-disease evidence.
• A modified Delphi consensus process to finalize recommendations.

This project will accelerate the translation of evidence-based care into practice, reduce variability in rehabilitation approaches, and ultimately improve physical and psychosocial outcomes for children with AMC.

Funding: 

Edith Strauss Knowledge Translation grant