The Share4Rare research project on neuromuscular rare diseases: analysing how the disease affects employment and education
Impact of neuromuscular diseases on education and working opportunities of patients and carers
The Share4Rare platform is growing in strength, with over 900 users validated since April 2019. This growing community of rare disease patients and families is providing a secure environment for people to connect, share information and learn more about their disease.
In light of this, Share4Rare launched a series of research projects covering some rare diseases. The ‘My Studies’ area of the platform, provides an opportunity for researchers to submit surveys to the Share4Rare community. Users who fit the eligibility criteria for a particular survey are able to access it in this part of the platform. Eligibility is determined by the information entered during the registration process (for instance based on diagnosis-or lack thereof, symptoms, age, etc). Data collected from the surveys will be analysed, and aggregated data made available through the platform.
Access to education and employment opportunities can have a significant impact on patients and their family life. Our research project on neuromuscular rare diseases aims to understand the impact that neuromuscular diseases have on these important aspects of life, which have been very poorly explored and reported so far.
The Share4Rare platform has offered a unique opportunity for this research, allowing to reach a broad spectrum of neuromuscular diseases in different countries. We aim to review the results of the neuromuscular reserach project, describing the access to education and employment opportunities to patients and their families when appropriate across all neuromuscular diseases, and analysing the impact of different factors, such as the underlying diagnosis, the patient age, their mobility status and the country where they live.
The World Duchenne Organisation and the John Walton Muscular Dystrophy Research Centre at Newcastle University are leading the project, contributing with their expertise in the field of neuromuscular conditions.
The neuromuscular project collects information about quality of life/burden of illness and the impact of the disease on education and employment opportunities for patients and their families. Quality of life data for neuromuscular diseases is scarce, and we are excited to have the opportunity to advance research in this area. The pilot will collect and analyse information for neuromuscular diseaes, including the following diseases:
- Muscular dystrophies, for instance Myotonic Dystrophy, Facioscapulohumeral MD (FSHD), Limb Girdle MD (LGMD), Congenital MD (CMD)
- Amyotrophic lateral sclerosis (ALS)
- Peripheral neuropathies
- Congenital myasthenias
- Congenital myopathies
The research study was originally opened for registered patients and carers who fit the criteria for the neuromuscular pilot. Patients and carers affected by one of the above diseases, who have not yet registered for Share4Rare but would like to participate in the research study, can register here.
Contact info@share4rare.org if you have questions, or would like additional information about the upcoming research projects.
