Tracking parkinsons study


#1
Hi Everyone in Rose tinted glasses,
I Filled a form/Questionaire in a while back.Well,here is my response.Followed by how I read it.Maybe it's me,or maybe too many people have -----d me over recently.Here goes anyway,past caring.
Dear Tracking Parkinson's respondent


Many thanks for your interest in participating in our groundbreaking Tracking Parkinson’s research study. I’m emailing to let you know that the Consultant and clinic you attend is not one of our study centres, but it may be possible for you to get involved in the study at another local clinic. Please check the list below to see whether there is a centre near enough to you. If there is and you feel you can travel to it, you may wish to speak to your Consultant or Parkinson's Nurse Specialist at your next clinic visit (or, if you have contact details for your Nurse Specialist, you may wish to phone them), to enquire further. The arrangements for doing this would be made locally, by agreement with you and the different doctors and nurses involved.

We have had a huge response from people with Parkinson's, so we think the project is going to be a big success!



With best wishes

Now after all the effort of going out on a limb(so to speak),alien to someone actually diagnosed socially phobic.This response is an insult.
I had designated my local participating centre.Obviously,this is a fob off.Numbers have obviously been met,filled by more suitable,compliant subjects(say no more).Got to be joking.Another statistical stitch up.
The previous memo/e-Mail is another way of saying,---K off,your services are not required,unless you create merry hell with your Neuro or PD Nurse.
Well is it worth it.No!!!,with a resounding encore.After all,numbers are full.little old me is not needed(too controversial,rocks boats,throw overboard,discard,subdue,repress)They have enough numbers.everything is going to be a great success.
Yeah!!!, will I believe in the findings, LOL,go and invent make believe.
Titan

#2
So you would have to ask permission of all the individual nurses and doctors you have come across (so as not to offend anyone).

#3
Hi Titan

I'm sorry to hear that the clinic you attend for your Parkinson's is not participating in the Tracking Parkinson's study - but hopefully there is a hospital that is which isn't too far away from you so you may still be able to take part if you wish.

The email you've received isn't a rejection, so please do talk to your Parkinson's nurse and/or neurologist about it. They can then make contact with your closest participating hospital and hopefully arrange for you to take part with them.

If you have any further questions or concerns please do get in touch with us by emailing research(at)parkinsons.org.uk or call the helpline on 0808 800 0303 and ask them to put you through to the research team.

I hope you find this helpful.

Very best wishes

Claire
(Research team)

#4
We received the same letter too. Next time maybe. It's always good to know about these things and if they get some results all well and good :)

#5
I also receivedcthis response and was disappointed but when I scrolled down discovered my site was there so I wonder if this is just a standard response to all. I did however get in touch with my PD nurse who had not received any info and she like me was surprised at the response as she had encouraged me to take part. I was then given contact details for Research nurse who explained that they were waiting for some paperwork, my details were taken and I am now waiting for an invitation letter. not sure how far away you are from a research site but it would be worth getting i in touch with PD nurse for clarity. Best wishes