For Researchers

The FD/MAS Patient Registry collects disease-specific natural history data about individuals with fibrous dysplasia, McCune-Albright syndrome (FD/MAS), with the goal of improving the understanding of fibrous dysplasia, McCune-Albright syndrome (FD/MAS) and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

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.

If you would like access to the FD/MAS Patient Registry data for a research project, please contact our registry administrator at registry@fibrousdysplasia.org for more information. Access to FD/MAS Patient Registry data is contingent upon project approval by the FD/MAS Patient Registry Advisory Board.