Gross motor functional classification for arthrogryposis multiplex congenita: protocol for co-development involving public with lived and professional experience
Clarice R S Araujo, Lauren Hyer, Susan E Sienko, Cathleen Buckon, Camille Costa, Daniel Natera-de Benito, Maureen Donohoe, Kristen Donlevie, Melissa Emblin, Alicja Fafara, Jennifer C Sullivan, Noémi Dahan-Oliel, AMC Registry Team members · 2025
Read Gross motor functional classification for arthrogryposis multiplex congenita: protocol for co-development involving public with lived and professional experience by Clarice R S Araujo, Lauren Hyer, Susan E Sienko, Cathleen Buckon, Camille Costa, Daniel Natera-de Benito, Maureen Donohoe, Kristen Donlevie, Melissa Emblin, Alicja Fafara, Jennifer C Sullivan, Noémi Dahan-Oliel, AMC Registry Team members (2025) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-12884608.txt.
Description
Clarice Araujo and a team of co-authors lay out a plan to build a movement rating scale for a group of rare birth conditions. Their protocol is from two thousand twenty-five. These conditions, grouped under one long name, cause stiff joints from birth. Children with them vary widely in how well they can move and walk.
No scale yet rates gross motor function for this group in a shared way. The project will draft one with an expert panel first. People who live with the condition, and clinicians who treat it, will refine the draft in group sessions. Surveys will then seek agreement across countries on each item. The scale will be adapted into French and Spanish. A final phase will test how well it works in practice.
Catalog record
| CREATOR | Clarice R S Araujo, Lauren Hyer, Susan E Sienko, Cathleen Buckon, Camille Costa, Daniel Natera-de Benito, Maureen Donohoe, Kristen Donlevie, Melissa Emblin, Alicja Fafara, Jennifer C Sullivan, Noémi Dahan-Oliel, AMC Registry Team members |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 37 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |