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:
- Ability to make registries and possession of a reliable database regarding the neuromuscular disorders,
- Providing support to the future national and/or international studies on the neuromuscular disorders,
- Acting both as a guide and a model to create a territorial data pool by generalizing the project,
- Keeping our patients informed regularly about the recent developments in the medical, social and rehabilitation fields of the neuromuscular diseases with the help of the experts,
- Education of the healthcare professionals and the patients in an attempt to disseminate the gathered data,
- Participation on behalf of our country in the future studies regarding the treatment and care standards, which would be built on the database of an international study conducted by and TREAT- NMD and encompassing us together with 21 other countries,
- Making the patients in our country benefit from the results inferred from the study.