CMD Common Data Elements (CDE) and
Case Report Forms (CRFs)

Cure CMD and NINDS have sponsored the development of CMD Common Data Elements and Case Report Forms which are currently available as Version 1.0.

The goal is for all clinical studies and trials to use the items that were identified as core elements to ensure core data is collected across multiple studies. This core data can then be analyzed and merged to provide more powerful analysis to answer key CMD clinical questions.

The Case Report Forms combine multiple common data elements (CDEs) and can act as a template for any CMD clinical study and trial. We would like to encourage investigators to use the CRFs and provide feedback for improvement to:

Case Report Forms:
Vital Signs CRF (revised May, 2012)
Motor Function History CRF (revised May, 2012
Gastrointestinal Function CRF (added May, 2012
Subject Contact Information CRF
Informed Consent CRF
Inclusion/Exclusion CRF
Diagnostic CRF
Brain Imaging CRF
Family History CRF
Muscle Imaging CRF
Demographics CRF
Prenatal History CRF
Developmental History CRF
Intake Medical History CRF
Surgical and Hospitalization History CRF
Physical Exam < 4 years of age CRF
Physical Exam >4 years of age CRF
24 Hr Holter Monitor CRF
Electrocardiogram CRF
Echocardiogram CRF
Laboratory CRF
Pulmonary Function Test CRF
Missed Visit CRF
Prior and Concomitant Meds CRF
Tissue Sample CRF

*core items are highlighted on forms

Click here to download all CRFs as zip file

The following individuals contributed to the development of the CMD CDEs:
Reghan Foley, MD
Carsten Bonnemann, MD
Jim Collins, MD, PhD
Ulrike Schara, MD
Hank Mayer, MD
Anastassios Koumbourlis, MD, MPH
Cynthia Joyce
Susan Iannaccone, MD
Petra Kaufmann, MD
Bill Martens
Kathy Mathews, MD
Eunice Kim
Anne Rutkowski, MD
Thomas Meier, PhD
Nicolas Coppard, PhD
Lilette Eskelinen
John Porter, PhD
Joanne Odenkirchen, MD
Rachel Richesson, MS, PhD, MPH
Stacie Grinnon
Christina You
Karen Siegel

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