REaDY (REgistry of muscular DYstrophies) is a clinical registry of patients suffering from Duchenne/Becker's muscular dystrophy (DMD/BMD), spinal muscular atrophy (SMA), myotonic dystrophy (DM) or facioscapulohumeral muscular dystrophy (FSHD).
start of the project: May 2004
Starting from May 2011, the project REaDY is a follow-up to an earlier project MDB – an international DMD/BMD registry, which was established in 2004.
The aim of the project REaDY is to record as many as possible patients suffering from the above-mentioned genetic faults and to support the development of treatment and care for those patients, based on comprehensive genetic examinations.
The structure of parametric documentation of the registry is compatible with the structure of international registries run within the TREAT-NMD project (Newcastle, England). This allows patients in the REaDY registry to be enrolled in international studies.
Patients themselves can access the registry structure (in case of DMD/BMD diagnosis only) and use the “quality of life” form to contribute to the database contents; this will help doctors understand better the perception of patients suffering from these congenital defects and assess the quality of provided health care.
Other important information: