Clinical trial NCT03231644: Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Official title: Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Fibrous Dysplasia
McCune Albright Syndrome
Mazabraud Syndrome
Keywords: Fibrous Dysplasia
McCune-Albright Syndrome
Mazabrauds
FD/MAS
Lead sponsor: Fibrous Dysplasia Foundation
Sponsor class: OTHER
First posted: 2017-07-27
Enrollment: 600
Sex: ALL
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Community sample of all patients in these particular disease communities.

Brief summary: 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.

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

Primary outcomes:
measure: Treatment satisfaction
timeFrame: Through study completion, an average of every 2 years
measure: Perceived symptoms of pain
timeFrame: Through study completion, an average of every 2 years
measure: Depression/anxiety
timeFrame: Through study completion, an average of every 2 years
measure: Stigma
timeFrame: Through study completion, an average of every 2 years
measure: Health-related Quality of Life
timeFrame: Through study completion, an average of every 2 years
measure: Financial health
timeFrame: Through study completion, an average of every 2 years
Secondary outcomes:
Other outcomes:
Locations:
city: Bethesda
country: United States
facility: Tovah Burstein
state: Maryland
Study officials:
References: