Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Fibrous Dysplasia, McCune Albright Syndrome, Mazabraud Syndrome. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
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.
Detailed description
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.
Primary outcome measures
- Treatment satisfaction [Time frame: Through study completion, an average of every 2 years]
- Perceived symptoms of pain [Time frame: Through study completion, an average of every 2 years]
- Depression/anxiety [Time frame: Through study completion, an average of every 2 years]
- Stigma [Time frame: Through study completion, an average of every 2 years]
- Health-related Quality of Life [Time frame: Through study completion, an average of every 2 years]
- Financial health [Time frame: Through study completion, an average of every 2 years]
Eligibility criteria
Inclusion Criteria any one or more of the following:
- clinical diagnosis of fibrous dysplasia
- clinical diagnosis of McCune-Albright syndrome
- clinical diagnosis of Mazabraud's syndrome
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- Tovah Burstein — Bethesda
Identifiers
NCT: NCT03231644 · Pro00018980.