Participation in clinical trials.

[honeycombe3]

On July 3rd I attended a meeting jointly organised by a number of PD support organisations which was a truly memorable experience! It focussed on clinical trials from the perspectives of PwP (especially those with experience of trials), carers/ their families & medical professionals. The event was brilliant & for me a breath of fresh air as it delivered ‘what it said on the tin’. I have attended many meetings & functions, especially about patient involvement /empowerment, which have raised expectations but failed to meet their objectives.

There was time planned to circulate which enabled me to talk to most of the people who stayed for lunch & to make brief contact with others over coffee.

I felt privileged listening to fellow PwPs who have been diagnosed for over 20 years sharing their unique experiences of the condition: changes in treatments, therapies, procedures & other clinical aspects but especially changes in perception & attitudes from others with PD, professionals & the public.

I was there as a PwP who has experience of medical & clinical trials.

I am currently involved in the Transeuro Stem Cell Transplant trial which involves a number of European countries. As each country has its own code of medical ethics this has delayed the schedule. The final hold-up was a UK bill re the use of human tissue in research which went before parliament in February but which had not been formally passed in May. When this happens the first transplants will take place in Sweden, hopefully before Christmas.

On the good news front: similar transplants were successfully completed in Scotland in January on patients who had suffered strokes.

I found out about the Scottish trial by Googling PD clinical trials or something like ‘stemcell transplant clinical trials- results/ news of/ etc’.

If you do this & find something in which you are interested why not find out more? You will get the latest information, be able to talk to people at the cutting edge & to judge for yourself the pros & cons of taking part.

[jillannf6]

hi honeycombe3

great that u r tkaign part in the trials for PD

I have PSP and it is no so easy to beaccepted on to trials

lol Jill

[honeycombe3 in reply to jillannf6]

Hi Jill, I was screened for a trial on a drug around 6 years ago & did not meet the criteria. This was a very poor experience & not at all like the Transeuro. If PwP arereally committed to finding a cure/cures for PD then get those fingers working & find some sort of trial you can try for. You can't possibly lose & you might be on a winner!!

[Susie01 in reply to honeycombe3]

Thank you for sharing your experiences. I would be interested in your journey. I am in the U.S. and have signed up for several trials and am on the list with the Michael J. Fox Foundation. To this point none have worked out for me.

[gran5- in reply to Susie01]

Piggybacking on your comment, Susie01, I'm in the States also and signed up with MJF but so far any trial that I might qualify for would require a lot of travel. I just can't hack it. Where in the States are you located?

[Susie01 in reply to gran5-]

I am in Chattanooga, TN. There was one trial in Virginia they called me about, but travel is also a problem for me and they no longer cover travel cost for participants. Also, my ability to drive is not predictable, I think that is true for most of us.

[gran5- in reply to Susie01]

sore spot for me, i've had wheels all my adult life but I had to admit that with my multiple Dxs i am not a reliable driver actually not reliable re:almost all aspects of my life, but i keep on keeping on. Any other path is unacceptable Oh i'm in Santa Fe about to move to Hollywood Hills both to far to meet someone living in TN!

[Susie01 in reply to gran5-]

It is very difficult when you have been independent to feel like you have to depend on other people to transport you...I was early onset PD, it is hard to accept. I drove to physical therapy today, the first I have been able to drive in a while due to balance issues, which we are working on in PT. It seems crazy, they are having me take baby steps at things I did without even thinking about it in the past, but I am determined! Best wishes to you in your move, yes, TN is a long way from where you are!

[froggatt55 in reply to honeycombe3]

Hi Honeycombe3 - you are so lucky to be on the Trial. I know Roger Barker - he gave me the best drug advice ever (in terms of what it did for me) and I applied to go on the trial but he said I was too old - he did say that I could look forward to the next phase - so I'm wishing you - and the trial (I have a friend Alison who is also on the trial) every success As an ex-pat Scot living near Sheffield, I was interested to hear about the Scottish Trial for stroke victims

[gran5-]

A silly aside. My picture is from winter due to my laptop's sudden death. My data and pics are all safe but i am currently working from my iPad which can not take in that stuff. When my icon changes you will know my computer woes are over!

[johntPM]

There is much excellent work going on around the world running clinical trials that may help PwP. However, I think there will always be the need for more trials. PwP can themselves run "simple" trials, more along the lines of curcumin than DBS.

I run a web site, parkinsonsmeasurement.org , which can collect survey data and run online tests to measure symptoms. Surveys are being run now. But before we can run any interventional trials, we need an ethics committee.

Is anyone prepared to volunteer to join an ethics committee?

John