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.

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 information to 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

Updated 3/31/2004