Searching for a cure, Improving lives

Steering Committee

The DMD Registry Steering Committee 

A Steering Committee is made up of at least five senior health professionals and researchers who are responsible for authorising and approving all access to the Registry by any researcher and/or health professional for the purposes of a specific research project or for the purposes of a specific course of treatment.

 

Members of the Steering Committee:

Dr Stephen Abbs (molecular geneticist) [Chair]

Director of Genetics Laboratories

Cambridge University Hospitals NHS Foundation Trust

Addenbrooke’s Hospital

 

Dr Emma Ashton (molecular geneticist)

Clinical Scientist

North East Thames Regional Genetics Service

Great Ormond Street Hospital NHS Trust

 

Therese Bradley (molecular geneticist)

Prinicipal Clinical Scientist

West of Scotland Genetic Services

 

Prof Kate Bushby (clinician)

Neuromuscular Genetics

Institute of Genetic Medicines

International Centre for Life

Nick Catlin (parent representative)

Co-founder of Action Duchenne

 

Mark Chapman (patient representative)

 

Dr Anne-Marie Childs (clinician)

Consultant Paediatric Neurologist

Leeds General Infirmary

 

Prof. Hanns Lochmuller (TREAT-NMD Alliance Neuromuscular Network)

Experimental Myology

Newcastle University

International Centre for Life

 

Dr Jo McCauley (molecular geneticist)

(Formerly of Molecular Genetic Laboratory at Guy’s & St Thomas’ Hospital)

 

Dr. Karen Naismith (clinician)

Consultant Paediatric

Ninewells Hospital & Medical School

 

Dr. Ros Quinlivan (clinician)

The National Hospital for Neurology and Neurosurgery

 

Angela Stringer (DMD Registry Curator)

 

 

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

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First draft of agenda announced – Action Duchenne International Conference

June 28th, 2017

We are extremely excited to announce the first draft of the agenda for the Action

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Sarepta announces its partner, Genethon, published new micro-dystrophin gene therapy data

July 28th, 2017

Data show for the first time a systemic therapeutic effect in DMD dogs using a

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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