It is clear from talking with researchers involved in Parkinson's investigations that patient recruitment for clinical trials is sometimes difficult which hinders the development of improved drugs and treatment.
Some ideas that came out at the last CPAG meeting (which I attend as a volunteer) were:
* Parkinson's UK could take on the role of contacting its members with a view to creating a database of those willing to take part
*A map of places where trials are taking place could be made available to all patients so we could see if there are any we could get involved in, in our local area
*Publicity about the benefits of taking part could be more widespread
*All patients could be asked by their Parkinson's specialist if they are interested.
Well, what do you think ?
Is there anything we could do to improve the situation ?
.....my neuro didn't have a clue when I told him I was on a stage 2 clinical drug trial, I actually had to spell the name of the drug so he could google it
...no wonder people are unaware
It seems like a good idea to have Parkinson's UK orchestrating the whole scenario of trials and liaising with neuros.
Too, I feel they should be focusing on bold trials such as stem cells which are the future I think and allowing older people (older than 65 years old) to go through those trials IF THEY CAN STAND THEM.
It is the time to be reasonably cautious but not over shy and timid. Nothing tempted, nothing gained and, in my opinion, it is better to try all possibilities
than living a miserable existence without any hope.
I am do sad to see every day or every other day a new name added to the list of newly diagnosed: please, please researchers activate your quest for a cure, it is too slow whatever the reasons for this state of affairs! please help us!