Clinical Trial Details
— Status: Recruiting
Administrative data
NCT number |
NCT03231644 |
Other study ID # |
Pro00018980. |
Secondary ID |
|
Status |
Recruiting |
Phase |
|
First received |
|
Last updated |
|
Start date |
October 31, 2016 |
Est. completion date |
October 2026 |
Study information
Verified date |
February 2023 |
Source |
Fibrous Dysplasia Foundation |
Contact |
Carmel Shemmesh-Rafalowsky |
Email |
PI.Registry[@]fibrousdysplasia.org |
Is FDA regulated |
No |
Health authority |
|
Study type |
Observational [Patient Registry]
|
Clinical Trial 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.
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.