Research

Investigator Information

The Registry can serve investigators through two primary avenues: by supplying anonymous (deidentified) data gleaned from the information contained in the data base or by assisting with subject recruitment for a particular study.

Information below indicates how members are classified (inclusion and exclusion criteria) to help guide investigators on the recruitment of members. The following section includes information on how to apply to use the resources of the Registry.

Diagnostic classification of members

Information about the clinical and genetic criteria for enrollment into the Registry are outlined in disease-specific Physician Checklist Forms to facilitate determination of eligibility. These Physician Checklist Forms were developed by the Scientific Advisory Committee and capture information on the members’ pattern of muscle weakness, EMG and muscle biopsy results, and diagnostic genetic testing. Several categories are used to classify enrollees because of 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. The forms are:

DM Physician Checklist Form

FSHD Physician Checklist Form

Use of Registry resources/Investigator application

Investigators interested in using the Registry must submit a brief application and summary of the protocol for review by members of the Registry Scientific Advisory Committee. To download a copy of the application, click here.

(Requires Adobe Acrobat Reader )

The Scientific Advisory Committee reviews the applicationto ensure that it is appropriate to use the Registry to support the investigation. Upon approval, the Registry staff will work with you to obtain the anonymous data needed or to determine which members to recruit based on the number of subjects needed, the inclusion and exclusion criteria detailed in your study, geographical restrictions, etc. If you are seeking assistance with recruitment, the Data Manager will extract potentially eligible members from the data base. Those members will be sent an announcement regarding your approved protocol. If the number of eligible members significantly exceeds the number of subjects you are seeking, we will indicate that recruitment will proceed on a "first come, first served" basis. Interested participants will contact you for information or to volunteer for the trial. Members will not be notified of investigations seeking anonymous data only.

For additional information regarding protocol submissions, please contact the Registry staff. We will be happy to assist you with your application. We can be reached toll free at 888/925-4302 or by email to

dystrophy_registry@urmc.rochester.edu