Publications by authors named "Carolina Navalon-Martinez"
Dev Med Child Neurol
October 2024
Article Synopsis
- The study aimed to create standardized common data elements (CDEs) for arthrogryposis multiplex congenita (AMC) to support international clinical research and multisite studies.
- A mixed-methods approach was used, involving focus groups and Delphi surveys, with participation from 45 experts and individuals with AMC experience from 11 countries.
- The resulting CDEs include 321 data elements and 19 measures, which will enhance data collection on AMC and promote collaborations, knowledge sharing, and better understanding of the condition through systematic research.
