The John Walton Muscular Dystrophy Research Centre (Newcastle University) and Duchenne UK are delighted to announce that the DMD Hub Central Recruitment Pilot Project is now active and accepting registrations.
Register online at: www.dmdhubrecruits.org
What is the DMD Hub Central Recruitment Pilot Project?
This DMD Hub Central Recruitment Pilot Project will establish a centrally coordinated national recruitment contact database, collecting information about people diagnosed with DMD and their preferences for potential participation in research studies in the UK. We are looking to assess whether this process is an effective method in supporting recruitment to research studies in the UK, regardless of a person’s geographical location. This pilot phase will be active for 12 months.
Who should register?
People with a confirmed diagnosis of DMD and who are interested in participating in research studies in DMD that are taking place in the UK. Children (under 16 years) must be registered by their parent or guardian. This study is only open to people who live in the UK.
How do I register?
You can register online and create an account so that you can view and update your information at any time. Register online at: www.dmdhubrecruits.org
What information is collected?
We ask for your personal details, such as name, address, date of birth, NHS number and where you are treated for your DMD. We also ask about your genetic diagnosis, motor function, wheelchair use, medication taken and preferences for participation in research studies (including type of study and travel preferences).
How is my information used?
If a trial site in the UK is looking for potential eligible patients for a specific research study in the UK, a Health Care Professional at a site can contact the DMD Hub Recruitment Pilot Project to ask for assistance in identifying potentially eligible people who may be able to participate.
Information provided by those who register and complete the questionnaire on the DMD Hub Recruitment Pilot Project study website will be reviewed and if a person matches the criteria for a research study that is recruiting, their information may be passed on to the recruiting trial site. As sites often have limits on the number of people they can recruit to a research study, any people registered on the DMD Hub Recruitment Pilot Project who match the recruitment criteria will be selected at random, to ensure a fair process for all.
I want to be involved in a research study. If I register, is this guaranteed?
There is no guarantee that registering your details will mean you will be automatically approached to take part in a research study.
The DMD Hub’s Clinical Trial Finder brings together trustworthy and reliable information on all existing and upcoming trials for DMD in the UK. Visit www.dmdhub.org/clinical-trial-finder/ for more information.
Dr Michela Guglieri (Project PI, Consultant Neurologist at Newcastle University and Newcastle Hospitals NHS Foundation Trust) and Dr Anne-Marie Childs (Consultant Paediatric Neurologist, Leeds Teaching Hospitals NHS Trust) recently hosted a webinar to introduce the DMD Hub Central Recruitment Pilot Project to patients and families. You can view the webinar here.
For further information about the DMD Hub Central Recruitment Pilot Project please visit the study website www.dmdhubrecruits.org or contact:
DMD Hub Central Recruitment Pilot Project
John Walton Muscular Dystrophy Research Centre
International Centre for Life
Newcastle upon Tyne
NE1 3BZ, United Kingdom
T: +44 (0) 191 241 8621