RESUMO
We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromuscular disease. Diagnosis and contact information are collected across all diseases and detailed prospective data is collected for 5 specific diseases: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM), Limb Girdle Muscular Dystrophy (LGMD), and Spinal Muscular Atrophy (SMA). Since 2010, the CNDR has registered 4306 patients (1154 pediatric and 3148 adult) with 91 different neuromuscular diagnoses and has facilitated 125 projects (73 academic, 3 not-for-profit, 3 government, and 46 commercial) using registry data. In conclusion, the CNDR is an effective and productive pan-neuromuscular registry that has successfully facilitated a substantial number of studies over the past 10 years.
Assuntos
Esclerose Lateral Amiotrófica , Atrofia Muscular Espinal , Distrofia Muscular do Cíngulo dos Membros , Distrofia Muscular de Duchenne , Distrofia Miotônica , Sistema de Registros , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Canadá , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
OBJECTIVE: To develop an interactive computer program that facilitates uniformity and accuracy in the collection and assessment of spinal cord-impairment data. DESIGN: A computer program that captures and processes clinical examination information in graphical form using the 2002 American Spinal Injury Association (ASIA) guidelines. This program calculates motor and sensory level, neurological level, the ASIA impairment scale (AIS) grade and zone of partial preservation. PARTICIPANTS/METHODS: The International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) were encoded and a graphic representation of the standard ASIA data-capturing form (with permission) was produced using Adobe Flash programming technology by the Division of Multimedia at the University of Saskatchewan. RESULTS: Testing by the development team has been successful in producing accurate ASIA-impairment data. CONCLUSION: Adapting the ISNCSCI system to a computer-generated format is possible and will promote uniformity in the collection and interpretation of impairment data. This program can also be used to educate health-care personnel, including residents and medical students, on classifying the impairment in traumatic spinal cord injury.
