Tracking Parkinsons


#1
I've just been on the 'Tracking Parkinson's' site because I wanted to e-mail them about my experience...........and noticed the link to the Forum with comments from a year ago!
Having read the 'Tracking Parkinson's Update' in the magazine The Parkinson (spring) I decided to check online to find my nearest hospital taking part in the study. I had previously discovered my local hospital was not involved in any research.
I phoned Alison at the Darent Valley Hospital (details online) to ask about joining their research......and she seemed totally confused! Didn't really know what I was talking about - then said the research study had about 3 different names. She said it hadn't started yet, but took my name and phone number. Needless to say I've had no contact as yet.
Anyone else had the same experience?

#2
Hi Sue123

Thanks for your post about our ‘Tracking Parkinson’s’ study, sorry to hear you’ve been having problems getting involved.

I’ve been in touch with the research team at Darent Valley hospital. They are waiting for the necessary R&D approval which they hope to have any day now. Once they have the approval they will begin recruiting and I’ve asked the team to contact you.

Thank you for letting us know, it’s so important for us to know about issue like this so that we can try to tackle them and ensure that people are not discouraged from taking part in research.

For more information about our ‘Tracking Parkinson’s’ study visit – www.parkinsons.org.uk/tracking or contact the research team at research@parkinsons.org.uk

Best wishes,

The research team

#3
Thanks for your message. I did receive your e-mail as well, and was about to write an update to say what you had told me. Obviously no-one else has tried to get involved with the research as I've had no responses. It won't be very helpful research if I'm the only one taking part!!

#4
I know two people who are taking part, one of them my husband. It probably depends on whether your local hospital is involved. We are at Norfolk & Norwich.

#5
Hi Sue123

I posted about my experience of taking part in the Tracking study at http://bit.ly/16tJVYp a couple of weeks ago. There are over 1300 people signed up (http://www.clinbase.co.uk/ ) so we’re nearly halfway there and we’re certainly not alone!

My neuro said last week that apparently people who take part in clinical research have better clinical outcomes! So there’s a reason for signing up.

Best wishes