For Patients
The FD/MAS Patient Registry
Welcome!
The FD/MAS Patient Registry is an online registry for people with fibrous dysplasia,
McCune-Albright syndrome (FD/MAS). It is sponsored by FD/MAS Alliance and hosted by the
National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This
registry will collect information from participants (or their authorized representatives) who are affected by
fibrous dysplasia or McCune-Albright syndrome (FD/MAS).
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The
information may be used for a variety of purposes such as conducting natural history studies and supporting
disease-specific clinical trial recruitment. The FD/MAS Patient Registry serves to:
- Support the design of clinical trials that explore new rare disease treatments.
- Describe the people who have fibrous dysplasia, McCune-Albright syndrome (FD/MAS) and to better understand the
variability and stages of fibrous dysplasia, McCune-Albright syndrome (FD/MAS) - Understand how fibrous dysplasia, McCune-Albright syndrome (FD/MAS) changes over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to
give the best care to improve the quality of life and outcomes of people with fibrous dysplasia, McCune-Albright
syndrome (FD/MAS); and - Identify people with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) who might be willing to take part in
other research studies or clinical trials. You will be able to choose whether you want to hear about these other
studies.
What types of data will be collected in the FD/MAS Patient Registry?
The FD/MAS Patient Registry collects data on the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The FD/MAS Patient Registry follows strict government guidelines to assure patient information is protected. The
platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the
NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform
application server and the database are also encrypted. As with any information one provides electronically, there
is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize
the chance of this occurring.