Muscular Dystrophy Association
National Recording
National Recording
MDA Hellas actively supports the research work of the Medical Genetics Laboratory of the University of Athens – Choremeio Research Laboratory. In collaboration with the Choremeio, a database of patients with Duchenne/Becker Muscular Dystrophy and Spinal Muscular Atrophy was created. The Greek database collects and stores the national clinical, genetic and personal data of patients with these specific diseases. The importance of such a project lies in the fact that in recent years’ developments in science have led to significant changes in the prevention and treatment of many diseases. New therapeutic protocols are constantly evolving, and many of these projects include the participation of patients from more than one country. However, for the design of extensive clinical trials it is very important to be able to identify suitable patients for studies quickly and easily.
The database will serve the following purposes:
- To create an open communication channel among clinicians, geneticists, researchers and programme participants
- To ease and improve communication between parents and government agencies
- To collect data in order to comprehend the magnitude of the problem in Greece and tackle it more effectively
- To provide and monitor the data to better understand the disease, which will also help in treating it more effectively
- To promote research on muscular dystrophy in Greece
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