Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Recruiting

• Conditions: McCune Albright Syndrome; Fibrous Dysplasia; Mazabraud Syndrome

• Registration Number: NCT03231644
• Lead Sponsor: Tovah Burstein

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.

Study Timeline

• Study Start: 2016-10-31
• Study First Submitted: 2017-07-20
• Study First Submitted QC: 2017-07-24
• Study First Posted: 2017-07-27
• Status Verified: 2023-02
• Last Update Submitted: 2023-02-13
• Last Update Posted: 2023-02-14
• Primary Completion: 2026-10
• Study Completion: 2026-10

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 600

Inclusion Criteria

Not provided

Exclusion Criteria

Not provided

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Depression/anxiety	Through study completion, an average of every 2 years	Hospital Anxiety Depression Scale
Perceived symptoms of pain	Through study completion, an average of every 2 years	Brief Pain Inventory
Stigma	Through study completion, an average of every 2 years	NeuroQol Pediatric and Adult Stigma short forms
Health-related Quality of Life	Through study completion, an average of every 2 years	SF-36,PedsQL 4.0
Treatment satisfaction	Through study completion, an average of every 2 years	FACIT-Treatment Satisfaction scale
Financial health	Through study completion, an average of every 2 years	FACIT-Cost

Trial Locations

Locations (1)

Tovah Burstein; 🇺🇸 Bethesda, Maryland, United States