Information for Patients and Families
The FD/MAS Patient Registry is a research project that allows patients and families to share their experiences with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) by completing a series of surveys.
The surveys were created in collaboration with patients, parents, clinicians and researchers, so that the data can be used to answer some of the most important questions about FD/MAS, including:
- the way the disease develops over time (its “natural history”),
- the patient experience of the disease, and its impact on quality of life,
- how and when diagnoses are made,
- the scope of treatments in use,
- what surgical techniques work best, and for whom,
- what other medical interventions work best, and for whom,
- what social services and therapies are useful,
- the costs of care to patients and their families,
- issues that concern patients (such as the impact of pregnancy on FD, or children feeling different and facing stigma), and
- which research questions and support programs you think are important to fund.
The FD/MAS Patient Registry is also an important way that people in the FD/MAS community can share their opinions on other important matters, including what kind of research is important to conduct in the future, and what kinds of support and services the Fibrous Dysplasia Foundation should provide.
Participation is free and convenient for people with FD/MAS and their legal guardians. You can join today at www.fdmasregistry.org.
Check out the slides or the video below to learn how to enroll in the registry, step by step.
If you’re located in the United Kingdom, please visit https://research.ndorms.ox.ac.uk/rudy/ to learn about the RUDY study, the FD/MAS registry based in the UK.
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:
- 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.
- 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.
The Fibrous Dysplasia Foundation Patient registry is a collaboration involving:
|Fibrous Dysplasia Foundation:||Oversight and investigator vetting|
|National Organization for Rare Disorders:||Software provider and security management|
|Patient Centered Outreach Research Institute:||Optimized Stakeholder Engagement|
|Global Rare Disease Registry Network:||Integration of de-identified data|
A portion of this project was funded by PCORI, an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.