On Thursday 31st March 2022, 7-8pm, Dr Michela Guglieri (Consultant Neurologist at Newcastle University and Newcastle Hospitals NHS Foundation Trust) and Dr Anne-Marie Childs (Consultant Paediatric Neurologist, Leeds Teaching Hospitals NHS Trust) will be hosting a webinar (for patients/families) to discuss the launch of the DMD Hub Central Recruitment Pilot Project.
This pilot project will establish a national contact list of children and adults with DMD, who are interested in participating research studies. The objective of this project is to assess the benefit to patients and trial sites of maintaining a centrally coordinated database and evaluate whether it is an effective tool in supporting recruitment to clinical trials for DMD in the UK, regardless of a person’s geographical location.
The DMD Hub Central Recruitment Pilot Project forms part of the DMD Hub and is a joint initiative of the John Walton Muscular Dystrophy Research Centre (Newcastle University) and Duchenne UK (who are funding the pilot phase of the project). Both organisations are working together, along with the steering committee, on the pilot phase of this project, with coordination being led by Dr Michela Guglieri and the DMD Hub team based at Newcastle University.
Over the past 10 years, there has been an increase in the number of DMD clinical trials and research studies evaluating the effect of new interventions and treatments, better understanding the natural course of the disease, and exploring new markers to measure disease progression or treatment effect. Due to the complexity of the disease and of setting up clinical sites to conduct them, these studies are often run in a limited number of centres in the UK. Inevitably this creates some challenges to both clinicians and patients and families.
If a trial site is looking for potential eligible participants to recruit for a specific research study, a Health Care Professional at that site can contact the DMD Hub to ask for assistance in identifying potentially eligible people, based upon analysis of information patients have provided to the DMD Hub Central Recruitment Pilot Project. If a person may be eligible for a particular research study, their information may be passed on to the Health Care Professional at the trial site, for them to contact the individual and if required, their local neuromuscular specialist, to discuss the specific trial and any potential recruitment.
The webinar will take place on zoom. If you are interest in attending we would appreciate if you could register by completing this short registration form (where you are also able to ask any questions about the project ahead of the meeting).