• A reliable database is needed for the neuromuscular diseases.

The foremost limitation of the studies on neuromuscular diseases has been the low incidence of such diseases. Multi-center studies are needed to constitute a reliable database and to increase the number of evidence-based studies. It is for this reason that global communication has been aimed to be established in the field of neuromuscular disorders for the first time in the world. Joining in such a global registry system wherein our country has already been participating proves important not only for the healthcare professionals and academics studying in the relevant field, but also for the patients and their families. Moreover, it stands for a significant starting point for the neuromuscular disease registries in our country.

• Defining the profile of the neuromuscular disorders in multiple perspectives is a requisition for both the patients and the healthcare professionals.

Our clinical experiences indicate that the number of the subjects in a given family who suffer from more than one neuromuscular disease is so substantial that cannot be neglected. Due to the lack of reliable data source in this regard, it is our clinical experiences that guide us. Considering the high rates at which consanguineous marriages occurs, the incidence of neuromuscular diseases, most of which are congenital, has been anticipated to be greater in our country compared to the other participating countries. Additionally, the fact that neuromuscular diseases lead to disablement in various degrees also moves the issue from the medical aspect to a social aspect. The reliable results expected to be obtained in all aspects at the end of this study will serve as a good sample in the determination of current status of the neuromuscular diseases in our country.  

• Multidisciplinary and multicenter studies are required in neuromuscular diseases.

To launch a database study in the field of neuromuscular disorders requires a multidisciplinary team collaboration that includes a constellation of patients, patients’ relatives, all healthcare professionals, academics, and healthcare providing institutions and centers. Contribution of the multicenter studies to the literature is also undisputed. Moreover, our country will find itself a place among the global data network using the international connections of this multicenter study. Thanks to this project, we will bring numerous studies on the neuromuscular disorders in the literature and our country will find itself a place in such future studies.

• The reference centers are important in the dissemination of the study.

Participation of such important reference centers as Hacettepe University and Istanbul University in the study will ensure an utmost contribution to the dissemination process and patients’ utilization. The fact that the project welcomes the participation requests from all centers and creates opportunities for education represents its strong aspect. Significant experiences on the neuromuscular disorders obtained during both the national and international studies by the academics and healthcare professionals working in such centers increase the value of this study conducted on the neuromuscular patient group

• A reliable database is needed for the neuromuscular diseases.

The foremost limitation of the studies on neuromuscular diseases has been the low incidence of such diseases. Multi-center studies are needed to constitute a reliable database and to increase the number of the evidence-based studies. It is for this reason that global communication has been aimed to be established in the field of neuromuscular disorders for the first time in the world. Joining in such a global registry system wherein our country has already been participating proves important not only for the healthcare professionals and academics studying in the relevant field, but also for the patients and their families. Moreover, it stands for a significant start for the neuromuscular disease registries in our country.   

• Defining the profile of the neuromuscular disorders in multiple perspectives is a requisition for both the patients and the healthcare professionals.

Our clinical experiences indicate that the number of the subjects in a given family who suffer from more than one neuromuscular disease is so substantial that cannot be neglected. Due to the lack of reliable data source in this regard, it is our clinical experiences that acts as guide. Considering the high rates at which consanguineous marriages occurs, the incidence of neuromuscular diseases, most of which are congenital, has been anticipated to be greater in our country compared to the other participating countries. Additionally, the fact that neuromuscular diseases lead to disablement in various degrees also moves the issue from the medical aspect to the social aspect. The reliable results expected to be obtained in all aspects at the end of this study will serve as a good sample in the determination of current status of the neuromuscular diseases in our country.

• Multidisciplinary and multicenter studies are required in neuromuscular diseases.

To launch a database study in the field of neuromuscular disorders requires a multidisciplinary team collaboration that includes a constellation of patients, patients’ relatives, all healthcare professionals, academics, and healthcare providing institutions and centers. Contribution of the multicenter studies to the literature is also undisputed. Moreover, our country will find itself a place in the global data network using the international connections of this multicenter study. Thanks to this project, we will bring numerous studies on the neuromuscular disorders in the literature and our country will find itself a place in such future studies.

• The reference centers are important in the dissemination of the study.

Participation of such important reference centers as Hacettepe University and Istanbul University in the study will ensure utmost contribution to the dissemination process and patients’ utilization. The fact that the project welcomes the participation requests from all centers and creates opportunities for education represents its strong aspect. Significant experiences on the neuromuscular disorders obtained during both the national and international studies by the academics and healthcare professionals working in such centers increase the value of this study conducted on the neuromuscular patient group

uskur kediy