Cerebral Palsy & Stem Cells
My son has cerebral palsy, for which the only forseeable (at least at the moment) 'cure' is the use of stem cells, to re-build the missing cells in his brain.
I don't care where that letter comes from, I and my wife would be interested in anyone who is proposing a study into the use of stem cells to help with CP.
There is a site which does attempt to link doctors/ researchers and patients at http://clinicaltrials.gov/ but I don't know whether it captures all trials in the UK, and it doesn't have anything of interest for us at least.
I can see that the researchers would like to have an idea of where people come from (geographically), some details on the patients condition(s) and the like, but they don't necessarily need to know all the details of the people that might match their criteria.
However, if people are interested in finding out more about a proposed study (after being initially contacted) then the only realistic method is for the patients to then contact the researchers.
It might be a nightmare to protect people against unwanted contact/ data protection etc. but the important thing (at least to me) is that contact between researchers and potential patients/ subjects is effective.
I would also like to find a way of suggesting research ideas to whoever might co-ordinate these things, but I guess that's another story.
IT? - well if ever a website is the answer then I have the questions.