Join theShare4Rare Neuromuscular Disease Study!
"Impact of neuromuscualr diseases on education and working opportunities of patients and carers"
During the last 10 years, there has been a growing interest in developing research related to neuromuscular diseases. There are therapies that have been tested in clinical trials and some of them are already available for patients in the United States and the European Union.
However, very little is known about the impact of neuromuscular diseases on the education and employment opportunities of both patients and their caregivers, and this can have a significant impact on their quality of life and their access to potential treatments in the future.
The diseases included in this study are the following:
Muscular dystrophies (MD)
Myotonic dystrophy (MD1 and MD2)
Fascioscapulohumeral MD (FSHD)
Limb girdle MD (LGMD)
Congenital muscular distrophies
Amyotrophic Lateral Sclerosis (ALS)
Charcot Marie Tooth (CMT)
Chronic inflammatory demyelinating polyneuropathy (CIDP)
Information provided directly by patients and their caregivers will allow us to understand the impact of rare neuromuscular diseases on the employment opportunities and the education of these patients and their families.
Questionnaires developed and designed by the John Walton Muscular Dystrophy Research Centre at Newcastle University (UK) and the World Duchenne Organization.
Analysis of the data to understand the impact of neuromuscular diseases on the education and employment opportunities of patients and their families.