Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT03231644|
Recruitment Status : Recruiting
First Posted : July 27, 2017
Last Update Posted : July 22, 2020
The FD/MAS Patient Registry is an IRB-approved research study that that invites the patients and families to help answer some of the biggest questions about FD/MAS by completing questionnaires about their lives with FD or MAS.
Have you enrolled in the FD/MAS Patient Registry yet? Are you up-to-date on your surveys? Take a trip to www.fdmasregistry.org today to learn more about the project, enroll, complete your surveys, or make sure you aren't due to provide more info!
The FD/MAS Patient Registry: Your story powers research.
|Condition or disease|
|Fibrous Dysplasia McCune Albright Syndrome Mazabraud Syndrome|
The FD/MAS Patient Registry is an IRB approved 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.
Participation is free and convenient for people with FD/MAS and their legal guardians. You can join today at www.fdmasregistry.org.
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||600 participants|
|Target Follow-Up Duration:||2 Years|
|Official Title:||Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry|
|Actual Study Start Date :||October 31, 2016|
|Estimated Primary Completion Date :||October 2026|
|Estimated Study Completion Date :||October 2026|
Patients with fibrous dysplasia and/or McCune-Albright syndrome and related disorders.
- Treatment satisfaction [ Time Frame: Through study completion, an average of every 2 years ]FACIT-Treatment Satisfaction scale
- Perceived symptoms of pain [ Time Frame: Through study completion, an average of every 2 years ]Brief Pain Inventory
- Depression/anxiety [ Time Frame: Through study completion, an average of every 2 years ]Hospital Anxiety Depression Scale
- Stigma [ Time Frame: Through study completion, an average of every 2 years ]NeuroQol Pediatric and Adult Stigma short forms
- Health-related Quality of Life [ Time Frame: Through study completion, an average of every 2 years ]SF-36,PedsQL 4.0
- Financial health [ Time Frame: Through study completion, an average of every 2 years ]FACIT-Cost
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03231644
|Contact: Kiran Murty||PI.Registry@fibrousdysplasia.org|
|Contact: Tovah Burstein||603-325-2489||TBurstein@fibrousdysplasia.org|
|United States, Michigan|
|Grandville, Michigan, United States, 49418|
|Contact: Tovah Burstein, MFA email@example.com|