About patient registries

A patient registry is a database that contains patients’ clinical and genetic information. Registries benefit patients, caregivers, relatives, clinicians and researchers alike. The main purposes of a registry are to:

• provide a valuable source of information for affected patients
• offer opportunities for patients to make connections with other similarly affected individuals
• help researchers learn more about specific diseases
• recruit patients for appropriate, approved clinical trials without delay
• monitor and study the best care and treatment practices
• collect, disseminate and share research findings
• provide collaborations and partnerships between patients, researchers, clinicians and stakeholders

Sharing data is essential in the research of rare diseases, and the use of global registries is vital in bridging gaps across the world.

We have detailed the primary patient registries that are associated with the MYO-SEQ project. For more information, please visit their website or download the patient information leaflets provided.