About us

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) or limb-girdle muscular dystrophy (LGMD). 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. In 2020 was created new part of REaDY registry for LGMD.

The aim of the registry 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.

Czech Society of Neurology, registered association and Society of Paediatric Neurology are the sponsors of the project and controllers of personal data. Institute of Biostatistics and Analyses Ltd, a spin-off company of the Masaryk University, provides registry management from in terms of IT services and data analysis and, at the same time, is the processor of personal data in the registry.

Since 2020, the REaDY registry are supported by the non-profit organization MDA RIDE. MDA RIDE organizes the largest motorcycle charity event in the Czech Republic and a public collection. The proceeds of the collection are used for individual assistance to people affected by muscular dystrophy, which are associated by the Association of Muscular Dystrophics in the Czech Republic and the Parent Project, and to support the activities of these organizations.

Project objectives

  • Running a database of Czech and Slovak patients with DMD/BMD, SMA, DM, FSHD and LGMD
  • Enrolling these patients in international studies
  • Facilitating the selection of eligible patients if promising treatments are developed
  • Supporting the research on muscular dystrophies
  • Information support on results of the latest treatment options
  • Comparing individual centres to each other
  • Setting and monitoring quality of care parameters

Project guarantors

Project management