With the TROPHOS clinical trials on the horizon, there are several good reasons for patients wishing to be considered for inclusion in trials to be registered with the UK SMA Patient Registry. Registered patients may be able to participate in clinical trials more easily. They are also kept informed about research results, such as new treatments for SMA.
The UK SMA Patient registry is administered by TREAT-NMD and further details about the registry and how to register can be obtained by following the link below:
For those who have started the process of signing up to the registry, please ensure that you have completed all the following steps:
- If you do not already have a paper copy of the informed consent form, please download this form, print it out, read it, fill it in, sign it and post it to the registry curator.
- Please give the registry curator information on your genetic test/report (test not done yet / test pending / haven’t got the genetic report myself / have sent the genetic report), as well as the contact details of a medical centre / hospital / physician / consultant through which the curator could get hold of your genetic report (if appropriate).
- Please complete the registration questionnaire (part 1 and part 2). You can do this either electronically through your personal online registration form or by requesting a paper copy.
If you have any questions about the SMA Patient Registry or how to sign up, please contact the TREAT-NMD SMA Patient Registry curator: Dr Brigitta von Rekowski.
(For questions about specific clinical trials or eligibility, please contact the UK trial centres direct). |
