From Consensus to Care: Co-Developing Rehabilitation Resources for Arthrogryposis Multiplex Congenita

Introduction/Background. Arthrogryposis multiplex congenita (AMC) is a group of rare musculoskeletal conditions causing multiple joint contractures at birth, reduced mobility, muscle weakness, and limitations in daily activities. Rehabilitation is critical across the lifespan, but rarity and variability of AMC limit availability and access to programs and care, requiring families to travel long distances, adding financial and caregiver burden. Improving access to evidence-based rehabilitation guidelines is a priority for clinicians, individuals with AMC, and caregivers. Consensus-based rehabilitation recommendations were developed by an international group of experts, however implementation is not ensured without effective dissemination.

Objectives. The project pursued the following objectives: (1) establish a sustainable partnership between clinicians, researchers, and individuals with lived experience; (2) co-develop and validate e-learning modules on rehabilitation recommendations; and (3) create and disseminate tailored knowledge mobilization products for priority audience groups.

Methods. A team of clinicians with expertise in AMC (rehabilitation, developmental pediatrics, neurology, physiatry, orthotics), researchers, individuals with AMC, and caregivers across four Canadian provinces, USA and Spain was established. Monthly virtual meetings, small-group work, and co-presentations at national and international events, sustained engagement across geographic locations. E-learning modules of the consensus-based rehabilitation recommendations were iteratively reviewed by the team to ensure accuracy, clarity, relevance, and accessibility.

Results. Feedback from individuals with AMC and caregivers refined language, content, format, accessibility, and delivery to enhance usability. Tailored dissemination products were co-created for distinct audiences, including caregivers, rehabilitation professionals, specialists and primary care. Dissemination strategies were aligned with audience needs to maximize reach and uptake.

Conclusion. This project addresses a critical gap in AMC care by delivering the first co-developed rehabilitation recommendations and associated educational resources. The work enhanced relevance, trust, and applicability. The deliverables provide a replicable and scalable model for meaningfully integrating lived experience into rare disease research, guideline development, and knowledge mobilization.