Registeries
Duchenne Muscular Dystrophy Registry
A DMD Registry has been set up by “action duchenne” as a tool for researchers to find individuals with specific gene variations and other clinical criteria for new Duchenne clinical trials. In 2008 the MDEX team have used the Registry to make contact with children with Duchenne for the UK exon skipping trial.
The DMD Registry aims to register people living with Duchenne and Becker Muscular Dystrophy as well as carriers of gene variation of the condition. The main purpose of the Registry is to allow clinicians and researchers to accelerate clinical trials and other research. If you would like to have your (our your child’s) name added to the DMD Registry click here
Spinal Muscular Atrophy Registry TREAT-NMD, in partnership with the Jennifer Trust for Spinal Muscular Atrophy in the UK, has developed a registry for people with SMA in the UK and Ireland. This registry is useful, not only for researchers carrying out clinical trials, but also to obtain prevalence data about the number of people with the condition and to try to achieve equal care for all people with SMA. For more information about the registry and how to register, please see click here
A DMD Registry has been set up by “action duchenne” as a tool for researchers to find individuals with specific gene variations and other clinical criteria for new Duchenne clinical trials. In 2008 the MDEX team have used the Registry to make contact with children with Duchenne for the UK exon skipping trial.
The DMD Registry aims to register people living with Duchenne and Becker Muscular Dystrophy as well as carriers of gene variation of the condition. The main purpose of the Registry is to allow clinicians and researchers to accelerate clinical trials and other research. If you would like to have your (our your child’s) name added to the DMD Registry click here
Spinal Muscular Atrophy Registry TREAT-NMD, in partnership with the Jennifer Trust for Spinal Muscular Atrophy in the UK, has developed a registry for people with SMA in the UK and Ireland. This registry is useful, not only for researchers carrying out clinical trials, but also to obtain prevalence data about the number of people with the condition and to try to achieve equal care for all people with SMA. For more information about the registry and how to register, please see click here
