The project is aimed to improve our registry system regarding Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy, the most commonly encountered neuromuscular disorders during the childhood period; to ensure a reliable database; to inform not only the patients and their families but also the healthcare professionals about the recent developments and gathered information for utilization; to provide a model in order for a national registry system to be developed.
A registry system was created for the patients with DMD and SMA in the study conducted by Faculty of Health Sciences Department of Physiotherapy and Rehabilitation and Pediatric Neurology Unit of Hacettepe University. Already possessing a database, the website was configured, transferring the patient registries into the database.
Recent developments and international studies as regards the neuromuscular diseases are going to be included in the website. Regular attendance of the project team to the international education programs will be ensured. The project is aimed to be disseminated and introduced in the relevant scientific activities. Moreover, registries of the patients will be ensured to be included in the international databases, should the patients give consent.
This project is expected to offer participation on behalf of Turkey in relevant international studies, facility DMD and SMA patients to follow up the most recent developments about their diseases through the website established in their native languages, and contribution in order for the healthcare professionals working in the neuromuscular field in Turkey to gain access to the most recent data through online connections.
The project is believed to provide the following opportunities: