Duchenne Registry
The DMD Registry was set up by Action Duchenne to collect vital gene variation information together on Duchenne patients. The purpose of the Registry is to provide research groups and clinicians with detailed and up to date clinical and gene variation information. The Registry will offer research groups access to high quality information that is unavailable from any other sources. The DMD Registry fully complies with the Treat NMD recommended criteria for Duchenne databases.
The exon skipping MDEX team and the UK biotech Summit are all preparing to use the Registry for their upcoming clinical trials. The Registry is seen a s a vital toll to help to accelerate clinical trials.
It is vital that you know the exact variation of your dystrophin gene. This will be checked with your geneticist by our admin team once you have registered. The Registry offers you an excellent report of all your data and also gives you key questions that you should take up with your clinician.
You can now register online and we will give you a login that will enable you to keep yuor own data fully up to date.
Duchenne Registry Governance and Partners
Steering Committee:
Dr. Steve Abbs, geneticist
Dr. Emma Ashton, geneticist
Prof. Kate Bushby, clinician
Prof. Francesco Muntoni, clinician
Prof. Terry Partridge, researcher
Prof. Federico Roncaroli, pathologist
Dr. Su Stenhouse, geneticist