Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
1 other identifier
observational
600
1 country
1
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2016
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
October 31, 2016
CompletedFirst Submitted
Initial submission to the registry
July 20, 2017
CompletedFirst Posted
Study publicly available on registry
July 27, 2017
CompletedPrimary Completion
Last participant's last visit for primary outcome
October 1, 2028
ExpectedStudy Completion
Last participant's last visit for all outcomes
October 1, 2028
August 12, 2025
August 1, 2025
11.9 years
July 20, 2017
August 7, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (6)
Treatment satisfaction
FACIT-Treatment Satisfaction scale
Through study completion, an average of every 2 years
Perceived symptoms of pain
Brief Pain Inventory
Through study completion, an average of every 2 years
Depression/anxiety
Hospital Anxiety Depression Scale
Through study completion, an average of every 2 years
Stigma
NeuroQol Pediatric and Adult Stigma short forms
Through study completion, an average of every 2 years
Health-related Quality of Life
SF-36,PedsQL 4.0
Through study completion, an average of every 2 years
Financial health
FACIT-Cost
Through study completion, an average of every 2 years
Study Arms (1)
FD/MAS Patients
Patients with fibrous dysplasia and/or McCune-Albright syndrome and related disorders.
Eligibility Criteria
Community sample of all patients in these particular disease communities.
You may qualify if:
- clinical diagnosis of fibrous dysplasia
- clinical diagnosis of McCune-Albright syndrome
- clinical diagnosis of Mazabraud's syndrome
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Tovah Bursteinlead
Study Sites (1)
Tovah Burstein
Bethesda, Maryland, 20816-2558, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- CROSS SECTIONAL
- Target Duration
- 2 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR INVESTIGATOR
- PI Title
- Community Engagement Director
Study Record Dates
First Submitted
July 20, 2017
First Posted
July 27, 2017
Study Start
October 31, 2016
Primary Completion (Estimated)
October 1, 2028
Study Completion (Estimated)
October 1, 2028
Last Updated
August 12, 2025
Record last verified: 2025-08