Gross motor functional classification for arthrogryposis multiplex congenita: protocol for co-development involving public with lived and professional experience

Res Involv Engagem. 2025 Dec 16. doi: 10.1186/s40900-025-00827-8. Online ahead of print.

Clarice R S Araujo^{1

2}, Lauren Hyer³, Susan E Sienko⁴, Cathleen Buckon⁴, Camille Costa^{5

6

7}, Daniel Natera-de Benito⁸, Maureen Donohoe⁹, Kristen Donlevie¹⁰, Melissa Emblin¹¹, Alicja Fafara¹², Jennifer C Sullivan¹³, Noémi Dahan-Oliel^{5

6}; AMC Registry Team members

AMC Registry Team members:
Noémi Dahan-Oliel, Reggie Hamdy, Frank Rauch, Lauren Hyer, Haluk Altiok, Sarah Nossov, Cary Mielke, Thania Ordaz, Philip F Giampietro, Krister Freese, Joel Lerman

¹ Shriners Hospitals for Children, Montreal, Canada. clarice.araujo@shrinenet.org.
² Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada. clarice.araujo@shrinenet.org.
³ Shriners Children's, Greenville, South Carolina, USA.
⁴ Shriners Children's, Portland, Oregon, USA.
⁵ Shriners Hospitals for Children, Montreal, Canada.
⁶ Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada.
⁷ Université de Montreal, Montreal, Canada.
⁸ Neuromuscular Unit, Department of Neurology, Hospital Sant Joan de Déu, Barcelona, Spain; Group of Applied Research in Neuromuscular Diseases, Institut de Recerca Sant Joan de Déu, Barcelona, Spain; Center for the Biomedical Research on Rare Diseases (CIBERER), ISCIII, Madrid, Spain.
⁹ Nemours Alfred I. Dupont, Delaware, Ohio, USA.
¹⁰ NAPA Center, Boston, Massachusetts, USA.
¹¹ Family Representative, Montreal, Canada.
¹² Institute of Physiotherapy, Jagiellonian University Medical College, Krakow, Poland.
¹³ Oregon Health & Science University, Portland, Oregon, USA.

No abstract available

Keywords: Arthrogryposis multiplex congenita; Children; Disability; Functional classification; Gross motor; Mobility; Youth.

Publication types