Information for Researchers

The FD/MAS Patient Registry is a centralized source of information on FD/MAS. We encourage researchers to utilize the registry. Interested researchers may apply to:

  1. Access de-identified data. You will be required to supply an abstract outlining the purpose of the use of the data, a copy of your CV and will be asked to complete an application form. The application will detail some additional requirements, as well as collect information from you about which data points you require for your analysis. All applications are subject to approval by the Registry Oversight Committee.
  2. Notify registry participants about your IRB approved research study. Please submit IRB-approved protocols and participant consent forms to the Registry Coordinator. You will be required to supply an abstract outlining the purpose of your research, a copy of your CV, a copy of your IRB-approved protocol, and copies of your consent forms. You will also receive an application which will detail additional requirements. All applications and materials are subject to approval by the Registry Oversight Committee. If approved, information about your research study will be distributed by an FD/MAS Patient Registry study coordinator.

Any researcher data requests that require the release of potential identifiers (such as participant zip code) will require written permission from each registry participant prior to fulfillment.

 

We encourage researchers to contact us early in the study design process at pi.registry@fibrousdysplasia.org. You may also send requests for application forms to pi.registry@fibrousdysplasia.org