Register of patients with neuromuscular diseases
The Registry collects personal, genetic and clinical data of patients suffering from neuromuscular diseases and arises from the need to order and update this information for epidemiological and research purposes, for a better knowledge of these diseases and to accelerate the development of new treatments.
This project stems from the alliance between some Patient Associations and the Telethon Foundation , which together formed the Association of the Italian Register of Patients with Neuromuscular Diseases, dedicated to the purpose.
At the moment the following Patient Associations are members of the Registry Association: ACMT-Network, AISLA, ASAMSI, Families SMA and UILDM.
Data collection takes place on separate databases for pathology that currently concern patients with Duchenne Muscular Dystrophy ( DMD ) or Becker ( BMD ), Spinal Muscular Atrophy ( SMA ), Charcot Marie Tooth disease ( CMT ), from Kennedy’s disease ( SBMA ) and Familial Amyloidotic Polyneuropathy ( hATTR ). The data collection form for Amyotrophic Lateral Sclerosis (ALS) is in preparation.
If you suffer from any of these conditions, we invite you to register with the Registry to be part of the community of patients and researchers, to be an active part in the fight against your illness and to benefit from all the positive effects that the Registry will allow you to obtain. .