Patient Registry for Fibrous Dysplasia, McCune-Albright Syndrome, and Mazabraud Syndrome

What this Trial Is About

This research study invites patients and families affected by fibrous dysplasia, McCune-Albright syndrome, and Mazabraud syndrome to share their experiences through a series of questionnaires. The study aims to answer key questions about how these conditions develop over time, patient experiences, diagnosis timing, treatment options, surgical techniques, social services, and the impact on quality of life and financial health. The project is led by Tovah Burstein and approved by an institutional review board to ensure ethical standards. Participants complete surveys designed with input from patients, parents, clinicians, and researchers. These surveys gather information on disease progression, symptoms like pain, mental health aspects such as depression and anxiety, stigma, treatment satisfaction, and the costs related to care. The study is observational, with no experimental treatments, and participation is free and fully remote, allowing people anywhere to contribute at their convenience. Participants provide information through surveys approximately every two years throughout the study duration. The research team monitors various outcomes including treatment satisfaction, pain, mental health, stigma, quality of life, and financial health. The study continues until 2028, with ongoing data collection to improve understanding of these rare conditions and help guide future research and support programs.

Fibrous Dysplasia, McCune-Albright Syndrome Patient Registry