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Common data elements for arthrogryposis multiplex congenita: An international framework.

Developmental medicine and child neurology - 1 Oct 2024

Nematollahi Shahrzad, Dieterich Klaus, Filges Isabel, De Vries Johanna I P, Van Bosse Harold, Natera de Benito Daniel, Hall Judith G, Sawatzky Bonita, Bedard Tanya, Sanchez Victoria Castillo, Navalon-Martinez Carolina, Pan Tony, Hilton Coleman, Dahan-Oliel Noémi

Abstract excerpt

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...

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PMID: 38491830
DOI: 10.1111/dmcn.15898

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