Help us raise funds that will be donated to research and treatment of the rare degenerative genetic disease called facioscapulohumeral muscular dystrophy (FSHD), which is characterised by marked facial inexpressiveness and progressive muscle weakness. Those affected experience varying degrees of disability, eventually losing the ability to walk and becoming totally dependent on others for much of their lives. ww.fshd-spain.org
🌟The Spanish Patient Registry is now a reality! 💡Since its launch, we are learning more about the natural history of FSHD! Other extra-muscular manifestations are being discovered, i.e., manifestations that not only affect the muscles, which were not previously thought to be involved. Why is this so important? - The more patients participate and the more complete the information about their symptoms, the more we can learn about the progression of FSHD. - To attract clinical trials to Spain: pharmaceutical companies look for countries with organised and detailed registries, where they can easily find patients who meet the requirements for their studies. - With a solid registry, there is a better chance that trials will be conducted in our hospitals, with our families. 🧠The next step is crucial: hiring a data entry clerk to enter, organise, and update the registry data. To do this, we need €25,000/year. Thank you for making this possible!
Publicado em
05/09/2017
Página web:
http://www.fshd-spain.org
Hemos actualizado el proyecto de nuestro grupo Teaming.
El objetivo de este proyecto es crear un registro clínico de pacientes con Distrofia Muscular Faciescapulohumeral para poder llevar a cabo proyectos de investigación con los datos contenidos.
Un Registro de pacientes es una base de datos que recoge información personal, genética y clínica de las personas que padecen la enfermedad, es la base para poder acceder a cualquier ensayo clínico y líneas de investigación futuras. Se realizará en el marco del proyecto del CIBERER (Centro de Investigación Biomédica en Red de Enfermedades Raras) para la creación del “Registro de Enfermedades Genéticas y de baja prevalencia (GenRaRe)”. El coste de arrancar un proyecto de tal envergadura se estima aproximadamente entre 10000 y 15000 €. y para ello pedimos colaboración en este grupo Teaming.
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Data de publicação
05/09/2017
Criado por
Asociación Distrofia Facioescapulohumeral FSHD Spain
Tipo de Grupo
ONG
Âmbito
Cuidados e tratamentos de saúde
Incapacidades
Investigação científica
País
Espanha
Copia e cola o URL
https://www.teaming.net/distrofiamuscularfsh
Teaming Manager
05/09/2017 13:01 h
Arrancamos nuestro grupo de Teaming. Comentarlo con vuestros familiares y amigos para que se unan a nuestra causa colaborando con 1 Euro al mes!
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