Duchenne UK launches new DMD Hub website: DMDHUB.ORG
Duchenne UK is pleased to announce the launch of the DMD Hub website, dmdhub.org, the go-to website for clinical trial information for Duchenne Muscular Dystrophy (DMD) in the UK.
The website will give you everything you need to know about DMD clinical trials in the UK, information on what a clinical trial is, and how to access research opportunities.
For the first time, patients will be able use a bespoke CLINICAL TRIAL FINDER which brings together trustworthy and up-to-date information on all trials in the UK.
Our Clinical Trial Finder has been designed for patients and caregivers, to be as easy to use and comprehensive as possible. Every trial has information on inclusion and exclusion criteria, outcome measures and an easy to understand lay summary. You can download a fact sheet for each trial, and use search filters to find trials that are relevant to you. The information on each trial has been sourced directly from industry and hospitals, and is verified by Duchenne UK and the Hub management team.
The patient section contains explanations of what a clinical trial is, and how they are run. It also has advice on what you need to know before participating in the clinical trial.
You can use the interactive map to search by location, this also has details of where all the sites are and more information and contact details for each of the hub sites.
The mission of the Hub is to ensure that all patients with DMD, including children and adults, have access to clinical research opportunities.
Alex Johnson, Co-Founder and Co-CEO of Duchenne UK, said:
“In May 2017, Duchenne UK conducted a survey to better understand what patients and caregivers want from care, research and clinical trials. We listened to what the community told us, and the development of Hub website was informed by many of the problems that were raised, such as having somewhere to easily find information on clinical trials. We would like to thank everyone who took the time to complete the survey and who attended our workshop. We hope to continue to work with you to address and find solutions to the challenges the Duchenne community faces.”
Emily Crossley, Co-Founder and Co-CEO of Duchenne UK, said:
“Finding and accessing clinical trials through existing resources can be difficult to navigate and the information hard to interpret. The DMD Hub is fundamental to achieving our goal of ensuring that all children with Duchenne have the chance to take part in clinical trials: the DMD Hub website is the latest step toward making it a reality. As well as acting as resource for patients, the Hub will also enable pharmaceutical companies to quickly connect with the network of growing network of UK universities and hospitals trained to conduct DMD trials.”
Robyn Pete, Advocacy Support officer and mum to Felix, said:
"So much of the vital information on understanding and accessing clinical trials for Duchenne is scattered between websites and organisations, which is so difficult to navigate, particularly if you are after a specific answer. The DMD Hub is user friendly, with easy to navigate FAQ’s for Duchenne clinical trials."
THANK YOU FOR YOUR SUPPORT