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UR Medicine


Information for Researchers

The Registry has over 2,600 well-classified and motivated patients, who have been followed longitudinally for up to 17 years.

Research investigators can facilitate their studies by using the registry to receive deidentified data and/or to receive recruitment assistance. Information below describes how researchers can: 1) submit an application to use the resources of the Registry; and 2) work with the Registry team to select data or eligible members for their studies.

  1. Submit an application

    To apply to use the Registry, please submit a brief application and a summary of your study protocol. (Requires Adobe Acrobat Reader).

    The Registry's Scientific Advisory Committee will review your application to ensure that the Registry is appropriate in supporting your investigation. Upon approval, the Registry staff will work with you to determine the data needed or which members to recruit based on the number of subjects needed, inclusion and exclusion criteria, geographical restrictions, etc. For recruitment assistance, potentially eligible members will be sent an announcement regarding your study. Interested members will then contact you for information or to volunteer for the study.

    For additional information, please contact us. We are happy to assist you with your application. We can be reached toll free at (888) 925-4302 or by email.

  2. Select data or eligible members

    Registry members are classified based on the clinical and genetic criteria outlined in disease-specific forms below. These forms can assist investigators in determining eligible candidates for their studies. These forms were developed by the Registry's Scientific Advisory Committee. Examples of the data collected include information on the members’ pattern of muscle weakness, EMG and muscle biopsy results, diagnostic genetic testing, assistive devices, and assistive devices, and other medical conditions.  Several categories are used to classify enrollees due to the variety and complexity of symptoms, onset and subtypes of DM and FSHD, variability in clinical and diagnostic procedures, regional health care differences, the quality of medical records available for review, and the inclusion of unaffected family members.