-
Need help to find out about what trials are available
Hi first post on this site,
I would like some help with regards to finding available trials for DMD. I know that doctors cannot tell you about available trials because of their fear of being sued, so how can I know about them if no medical professional can/will provide that information.In the news a man who has hunters disease recently got the first gene therapy treatment on humans in the uk. That man obviously got that information somehow and was able to get put on the therapy.
Hopefully some of you forum members have or know of someone who has got information on trials and knows the process to actually get on such trials.
Reply To: Need help to find out about what trials are availableHi and welcome to forum
Might be worth while looking at DMD pathfinders group for information.
Im not sure if they will have what you are looking for but they are a user led group ran by fellow DMD adults.
http://www.dmdpathfinders.org.uk
also on facebook
DMD pathfinders as well as MDUK hold informative group meetings across the UK.
Reply To: Need help to find out about what trials are availableOne of the ways I find out is via the FSH Registry. It appears that if some trials or other research is going on the researchers will look at the registry and notify the folk on there. You are then able to volunteer to help or not. The equivalent for DMD is here https://www.dmdregistry.org/registration, so you might want to consider putting your details in. Catatude has mentioned the meetings held around the UK, but MDUK also has a magazine which you can subscribe to which often gives details of ongoing work. You may also find that your neurologist will be able to help you, at least how to find this information.
Lots of things for you to try but clearly your first stop should be dmdpathfinders.Mike
So many love songs, so little love.
You must be logged in to reply to this topic.