EGYPT PED-NMD – Pediatric NMD Registry (BMD, DMD, SMA) – Egypt

EGYPT PED-NMD: National Registry for Egyptian Pediatric Treating Neuromuscular Diseases

Data base for Egyptian patients with SMA as a part of National Registry for Egyptian Pediatric Treating Neuromuscular Diseases

EGYPT PED-NMD:

• Objective 1: Establish local database with web-based data entry for infants and Children with Neuromuscular Diseases/congenital NMD; spinal muscular atrophy; Duchenne/Becker and congenital muscular dystrophies; congenital myopathies and congenital myasthenic syndromes; and acquired NMD neuropathies, myasthenia gravis and myositis, at Pediatric department, Childrens Hospital Faculty of Medicine, Ain Shams University. To establish membership organization that supports and promotes a national network of university-based interdisciplinary programs treating infants and children with NMD.
• Objective 2: To generalize the NMD standardized protocols for diagnosis and providing standards of care for 1) Diagnosis, 2) investigation of risk factors, 3) management, 4) outcome assessment of infants and children with neuromuscular diseases, and 5) social and rehabilitation of children with NMD
• Objective 3: To provide support education and resources for children with NMD, their families and their communities. Facilitate and support connections among pediatric NMD and their communities, Egyptian-wide and internationally. Increase awareness about pediatric NMD throughout Egypt. Support collaboration between families, physicians, and the community for supporting newly diagnosed families to share experiences and provide support that will impact these special children and their families in the future.

Website:

http://pediatric.asu.edu.eg/redcap/index.php

Contact Number:

+20 1223183943