Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorTovah Burstein
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
clinical diagnosis of fibrous dysplasia
clinical diagnosis of McCune-Albright syndrome
clinical diagnosis of Mazabraud's syndrome
Disqualifiers
None
Trial population
Community sample of all patients in these particular disease communities.
Trial design
Design model
Cohort
Time perspective
Cross-sectional
Treatments tested in this trial
Not listed
Trial groups
600 Participants
are grouped into 1 trial groupGroup A: FD/MAS Patients
Trial outcomes
Primary outcomes
1
Treatment satisfaction
FACIT-Treatment Satisfaction scale
Time frame
Through study completion, an average of every 2 years2
Perceived symptoms of pain
Brief Pain Inventory
Time frame
Through study completion, an average of every 2 years3
Depression/anxiety
Hospital Anxiety Depression Scale
Time frame
Through study completion, an average of every 2 years4
Stigma
NeuroQol Pediatric and Adult Stigma short forms
Time frame
Through study completion, an average of every 2 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Tovah Burstein
Lead sponsor
Fibrous Dysplasia Foundation
Sponsor institution
Source ClinicalTrials.gov