MDA RIDE Supports The Nationwide Registry Of Muscular Dystrophy Patients
The MDA RIDE monitors all activities related to the research and development of effective treatments for patients suffering from incurable muscular dystrophy. Institut biostatistiky a analýz s.r.o. (The Institute of Biostatistics and Analyzes, IBA), an institute of The Masaryk University, is one o the organizations dedicated to clinical research projects in this area. Based on multiple meetings, the MDA RIDE decided to financially support IBA processing patient personal data within the REaDY project guaranteed by professional medical societies.
The REaDY project (REgister of muscular DYstrophies) engages in the collection of data on treatments and development of muscular diseases including the most common Duchenne Muscular Dystrophy. The registry's mission is recording as many patients with these genetic birth defects, and assisting at the development of treatments and care for patients based on complete genetic examinations. The structure of the recorded patient documentation matches the structure of the Newcastle located TREAT-NMD project international registries. Thanks to this, registered patients can also be included in international studies.
The main reason for our active financial support is the fact that all Czech patients have access to this register and can themselves actively participate in improving the monitored data quality. Our future cooperation has also another reason on top of the professional importance of this project. The MDA RIDE can help patients who need help as soon as possible using that data.