AMC REGISTRY (EXPAND-AMC Project)

Theme: Epidemiology, Phenotyping, Genetics, Outcomes

The AMC Registry is a large, multi-site, prospective international registry designed to transform the understanding and care of children with Arthrogryposis Multiplex Congenita (AMC). Hosted across eight Shriners Hospitals sites in Canada, United States and Mexico, the registry currently includes 600 children. This rich dataset includes pregnancy and birth history, joint involvement, mobility, pain, quality of life, self-care, and surgical outcomes.

A major innovation of the AMC Registry is its integration of whole genome sequencing, enabling the discovery of new genetic variants and improving diagnostic precision. 

The registry supports four overarching aims:

 • Describe patient-reported outcomes and factors associated with these outcomes in children with AMC 

 • Evaluate surgical outcomes to guide evidence-based best practices.
• Develop a Gross Motor Function Classification for AMC (GMFC-AMC) to better monitor functional changes.
• Correlate genotype and phenotype to illuminate pathways leading to congenital contractures.

This registry provides an unprecedented foundation for advancing functional classifications, international data harmonization, and personalized medicine approaches for AMC.

Funding: 

• Shriners Children’s 79137 (2023-2026)

• SHC-GIT Seed: Platform Architecture and Machine Learning for Arthrogryposis 72032 (2021-2023) 

• Shriners Children’s 79150 (2019-2022)

• Shriners Children’s 79150 (2017-2018)
  
  Download the Infographic