The Charcot-Marie-Tooth Association (CMTA) proudly supports researchers around the globe who share our community-led mission: working to improve the lives of people living with Charcot-Marie-Tooth disease (CMT) while working to find treatments and ultimately a cure for this disease. Because we can’t do this without you, we have an exciting Patients as Partners in Research opportunity for our CMT community members who are living in the UK.
In collaboration with UK-based CMT clinical researcher, Dr. Alexander Rossor, at National Hospital for Neurology and Neurosurgery and University College London’s Queen Square Institute of Neurology in London, the CMTA invites all UK CMT community members to participant in the new UK CMT Registry. This first-of-its-kind patient registry in the UK is similar to the CMTA’s Patients as Partners in Research that you might already have registered with, but the UK CMT registry is not a CMTA registry or program.
What is This CMT Research Opportunity?
This CMT research opportunity is a project to create a registry of patients in the UK who have CMT and who are willing to be contacted for ethically approved CMT research projects. Currently, there is no such registry of people in the UK who have CMT. This absence is a major barrier to recruiting for CMT clinical trials. The UK CMT Registry will ensure that people in the UK who have CMT will have frontline access to CMT clinical research throughout the UK.
Where is This CMT Research Taking Place?
This CMT research is taking place in the UK. The UK CMT registry is located in the UK and is managed by Dr. Rossor at National Hospital for Neurology and Neurosurgery and University College London’s Queen Square Institute of Neurology in London.
Who is Eligible to Participate in This CMT Research?
The UK CMT Registry is open to any UK resident who has CMT. Registration is online and registration is open to all UK CMT community members regardless of CMT subtype. Registering will put you in front of the line to be notified of any CMT clinical trial you might be eligible for in the UK.
How Do I Participate in this CMT Research?
If you or a loved one lives in the UK and have CMT, you just need to click on the link below which will take you to the registration page for the UK CMT Registry.
Can I also Register with the CMTA’s Patients as Partners in Research?
Yes, you can still register with the CMTA’s Patients as Partners in Research, and we invite you to if you have not already registered. Our Patients as Partners in Research is open to every CMT community member no matter where you live. Although the CMTA is not funding the UK CMT Registry, we fund and support clinical research and trials all over the world. The best way to be informed of any clinical trial you might be eligible for and interested in no matter where you live is to register with the CMTA’s Patients as Partners in Research before you go.
Create a Patients as Partners in Research profile today!