Myotonic 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)

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

Myotonic Dystrophy Highlight Summary: Overview of all Myotonic 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.

Form Search Instructions - Please Read Before Searching

The Form Search is designed to filter the CRF Modules, Guidance Documents, and NOCs on this page by Search Term, Domain, Subdomain, and/or Copyright Status. The Copyright field is designed to filter between forms that are freely available online and forms that are copyrighted or trademarked. Please note that regardless of copyright/trademark status, these instruments are not available on this website. All recommended instruments, regardless of copyright status, have informational documents posted on the NINDS CDE website which provide details concerning availability.

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Select a Sub-Disease for your NeuroRehab study to view the CDEs for those types of studies.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other Sub-Diseases include recommendations specific to existing NINDS CDE project disorders.

Overview of Working Group Recommendations
Summary Documents
CRF Module/Guidance CDEs
Summary of Recommendations for DM N/A
Participant Characteristics
CRF Module/Guidance CDEs
General Core CDE Details
Demographics CDE Details
Social Status
CRF Module/Guidance CDEs
Social Status CDE Details
Participant History and Family History
General Health History
CRF Module/Guidance CDEs
Family History CDE Details
Medical History CDE Details
Treatment/Intervention Data
CRF Module/Guidance CDEs
Respiratory Interventions CDE Details
Outcomes and End Points
CRF Module/Guidance CDEs
McGill Pain Questionnaire (MPQ) N/A
Multifactorial Patient Reported Burden of Disease
CRF Module/Guidance CDEs
Myotonic Dystrophy Health Index (MDHI) N/A
Performance Measures
CRF Module/Guidance CDEs
Wechsler Abbreviated Scale of Intelligence (WASI) N/A


To develop the Myotonic Muscular Dystrophy (DM) CDEs, the DM 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.


The Myotonic Dystrophy (DM) CDE Working Group has developed the CDEs for their recommendations. The DM 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 DM research.

Complete Myotonic Dystrophy (DM) CDE Roster

The complete DM CDE Working Group roster is shown below.

MMD Working Group

MMD Working Group

  • Tetsuo Ashizawa, MD
    Houston Methodist Hospital, Houston, Texas
  • Richard J. Barohn, MD
    University of Kansas Medical Center, Kansas City, Kansas
  • Kathie M. Bishop, PhD
    Isis Pharmaceuticals, Carlsbad, California
  • John W. Day, MD, PhD
    Stanford University Medical Center, Stanford, California
  • Pr. Bruno Eymard, MD, PhD
    Institut de Myologie, Paris, France
  • William Groh, PhD
    University of South Carolina, Columbia, South Carolina
  • Chad Heatwole, MD
    University of Rochester Medical Center, Rochester, NY, USA
  • Laura Herbelin
    University of Kansas Medical Center, Kansas City, Kansas
  • William Bruce Martens
    University of Rochester Medical Center, Rochester, New York
  • Giovanni Meola, MD, PhD
    University of Milan, San Donato Milanese, Italy
  • Richard T. Moxley III, MD
    University of Rochester Medical Center, Rochester, New York
  • Shreedevi Pandya , PT, DPT, MS
    University of Rochester Medical Center, Rochester, New York
  • Jack Puymirat, MD, PhD
    University of Laval, Quebec, Canada
  • Benedikt Schoser, MD
    Ludwig-Maximillians University of Munich, Friedrich Baur Institute, Munich, Germany
  • Bjarne Udd, MD, PhD
    Tampere University and University Hospital, Tampere, Finland

NIH Coordinating Team

NIH Coordinating Team

  • Robin Conwit, MD
    National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, MD, USA
  • 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, MD, USA (2014 - present)
  • Joanne Odenkirchen, MPH (Until 2016)
    NINDS CDE Project Officer, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, MD, USA
  • 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 Company, LLC
  • Joy Esterlitz (Until 2020)
    The Emmes Company, LLC
  • Robin Feldman, BS, MBA
    The Emmes Company, LLC
  • Muniza Sheikh, MS, MBA
    The Emmes Company, LLC


A publication related to the Myotonic 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.


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

Myotonic Dystrophy CDE Revision History Document