Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry

Status: Recruiting
Location: See location...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• clinical diagnosis of fibrous dysplasia

• clinical diagnosis of McCune-Albright syndrome

• clinical diagnosis of Mazabraud's syndrome

Locations
United States
Maryland
Tovah Burstein
RECRUITING
Bethesda
Contact Information
Primary
Carmel Shemmesh-Rafalowsky
PI.Registry@fibrousdysplasia.org
Backup
Tovah Burstein
TBurstein@fibrousdysplasia.org
603-325-2489
Time Frame
Start Date: 2016-10-31
Estimated Completion Date: 2028-10
Participants
Target number of participants: 600
Treatments
FD/MAS Patients
Patients with fibrous dysplasia and/or McCune-Albright syndrome and related disorders.
Sponsors
Leads: Tovah Burstein

This content was sourced from clinicaltrials.gov