Data Standards
Organized by domains and subdomains often used in clinical studies, data standards include:
- CDEs — Classified as Core, Supplemental–Highly Recommended, Supplemental, or Exploratory
- CRF Modules — Template forms that logically organize CDEs for data collection
- Guidance Documents — Provide further information about the CDEs
- Instrument Notice of Copyright (NOC) Documents — Include pertinent information on recommended instruments (Instrument Notice of Copyright Information)
Facioscapulohumeral Muscular Dystrophy Start-up Resource Listing: All Core and Supplemental–Highly Recommended CDEs recommended for Facioscapulohumeral Muscular Dystrophy study start-up
Facioscapulohumeral Muscular Dystrophy Highlight Summary: Overview of all Facioscapulohumeral Muscular Dystrophy-specific CDE recommendations as they appear on the website
Click Expand All to view the CDEs associated with the CRF modules, organized by domain and subdomain.
Overview
To develop the Facioscapulohumeral Muscular Dystrophy (FSHD) CDEs, the FSHD CDE Working Group met from April 2014 to October 2014. The recommendations were posted for public comment in November 2014 and version 1.0 was released at the end of February 2015.
Roster
The Facioscapulohumeral Muscular Dystrophy (FSHD) CDE Working Group has developed the CDEs for their recommendations. The FSHD CDE Working Group is supported by the NINDS CDE Team. The Working Group began meeting by teleconference in May 2014 and held calls every four to six weeks to define the CDEs for their domains and to recommend standardized, validated instruments for FSHD research.
The complete FSHD CDE Working Group roster is shown below.
Publications
A publication related to the Facioscapulohumeral Muscular Dystrophy CDE initiative will be written at a later date. The citation for this publication will be included on this site as soon as it is available.
Updates
Please see attached revision history document. Please contact NINDSCDE@emmes.com if you require further information or have any questions about the revision history.