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. Please submit a complete Recruiting Assistance Request Form and all attachments to pursue this resource. All applications are subject to approval by the Registry Oversight Committee.

  2. Notify registry participants about your IRB approved research study. Please submit a complete Recruiting Assistance Request Form and all attachments to pursue this support. 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.

  3. Add customized questions to the FD/MAS Patient Registry. Please reach out to pi.registry@fibrousdysplasia.org to pursue this resource.

Researchers interested in requesting support recruiting or access to data should complete an application. Researchers intersted in adding customized questions to the Registry should reach out to pi.registry@fibrousdysplasia.org. We encourage all researchers to contact us early in the study design process at pi.registry@fibrousdysplasia.org.

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. 

Here's a look at how the FD/MAS Patient Registry can support your work: