Shahrzad Nematollahi, Klaus Dieterich, Isabel Filges, Johanna I P De Vries, Harold Van Bosse, Daniel Natera-De Benito, Judith G Hall, Bonita Sawatzky, Tanya Bedard, Victoria Castillo Sanchez, Carolina Navalon-Martinez, Tony Pan, Coleman Hilton, Noémi Dahan-Oliel
AIM: To facilitate multisite studies and international clinical research, this study aimed to identify consensus-based, standardized common data elements (CDEs) for arthrogryposis multiplex congenita (AMC). METHOD: A mixed-methods study comprising of several focus group discussions and three rounds of modified Delphi surveys to achieve consensus using two tiered-rating scales were conducted. RESULTS: Overall, 45 clinical experts and adults with lived experience (including 12 members of an AMC consortium) participated in this study from 11 countries in North America, Europe, and Australia...
March 16, 2024: Developmental Medicine and Child Neurology