Congenital Muscular Dystrophy

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)

Congenital Muscular Dystrophy Start-Up Resource Listing: All Core and Supplemental–Highly Recommended CDEs recommended for Congenital Muscular Dystrophy study start-up

Congenital Muscular Dystrophy Highlight Summary: Overview of all Congenital 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.

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Overview of Working Group Recommendations
Summary Documents
CRF Module/Guidance CDEs
Summary of Recommendations for CMD N/A
Participant Characteristics
Social Status
CRF Module/Guidance CDEs
Social Status CDE Details
CRF Module/Guidance CDEs
General Core CDE Details
Demographics CDE Details
Treatment/Intervention Data
CRF Module/Guidance CDEs
Prior and Concomitant Medications CDE Details
CRF Module/Guidance CDEs
Respiratory Interventions CDE Details
Outcomes and End Points
Performance Measures
CRF Module/Guidance CDEs
Motor Function Measure (MFM) N/A


To develop the Congenital Muscular Dystrophy (CMD) CDEs, the CMD 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.

Other CMD CDE development:

In 2010, the CMD CDE Project developed CDEs created in collaboration between the NINDS and Cure CMD. These CDEs are tailored specifically for a CMD natural history study and may be reused as appropriate.

Download Congenital Muscular Dystrophy (CMD) Natural History Study CDE Package


The Congenital Muscular Dystrophy (CMD) CDE Working Group has developed the CDEs for their recommendations. The CMD 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 CMD research.

Complete Congenital Muscular Dystrophy (CMD) CDE Roster

The complete CMD CDE Working Group roster is shown below.

CMD Working Group

CMD Working Group

  • Angela Giacoletti Argento, PhD
    University of Michigan Hospital and Health Systems, Ann Arbor, Michigan
  • Carsten Bonnemann, MD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Jim J. Collins, MD, PhD
    Cincinnati Children's Medical Center, Cincinnati, Ohio
  • James Dowling, MD, PhD
    The Hospital for Sick Children, Toronto, Canada
  • Susan T. Iannaccone, MD, FAAN
    University of Texas Southwestern Medical Center, Dallas, Texas
  • Chamindra Konersman, MD
    Medical College of Wisconsin, Milwaukee, Wisconsin
  • Michael W. Lawlor, MD, PhD
    Medical College of Wisconsin, Milwaukee, Wisconsin
  • Kathy Mathews, MD
    University of Iowa Children's Hospital, Iowa City, Iowa
  • Francesco Muntoni, MD
    University College London, Institute of Child Health-Dubowitz, London, United Kingdom
  • Susan E. Sparks, MD, PhD
    Levine Children's Hospital, Charlotte, North Carolina

NIH Coordinating Team

NIH Coordinating Team

  • Robin Conwit, MD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Elizabeth McNeil, MD, MSc
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Glen Nuckolls, PhD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Joanne Odenkirchen, MPH (Until 2016)
    NINDS CDE Project Officer, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland
  • Yaffa Rubinstein, PhD
    National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland
  • Tiina K. Urv, PhD
    National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), Bethesda, Maryland



  • Sherita Ala'i, MS (Until 2018)
    The Emmes Corporation
  • Joy Esterlitz, MS
    The Emmes Corporation
  • Robin Feldman, BS, MBA
    The Emmes Corporation
  • Muniza Sheikh, MS, MBA
    The Emmes Corporation


Please see attached revision history document. Please contact if you require further information or have any questions about the revision history.

Congenital Muscular Dystrophy CDE Revision History Document