NeuroTalk Support Groups - Clinical Trials

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Clinical Trials (https://www.neurotalk.org/parkinson-s-disease/114670-clinical-trials.html)

I have a couple of questions and would like as much feed back anyone would like to provide. While I have my own personal perspective in five trials I have participated in, I would appreciate any comments that I can
include along with mine (anonymously, of course.)

I am preparing to be on a patient panel where I, along with others, will be asked questions about participation in trial(s); a patients perspective. Only 30 minutes are provided for this part of the conference. The attendees will be clinical trial staff and I have no idea the number of attendees at this conference. The conference is put together by Cambridge Healthtech Institute (CHI).

Please ONLY those who have participated in a clinical trial, or multiple trials.

What motivated you to participate?
How did you find out about a trial that you participated in; e.g. physician's office, NIH clincialtrials.gov, PDtrials.org, from another PWP.
What, if anything, did you wish you had been told about the trial?
Was the Informed Content process complete enough for you and/or a family member who may have gone through the IC process with you?
Were you given information about contacting a trial staff member when you needed to do so? If so, what was the response time, and did you feel that the staffer listened to you and took you seriously?
What did your expectation about the trial staff; the pricipal investigator (the physician you saw), the other medical staff, the testing staff, etc.

contacting you privately

please phoneme - i've lost your phone number!!!

Quote:

Originally Posted by Stitcher (Post 621770)

What motivated you to participate?
How did you find out about a trial that you participated in; e.g. physician's office, NIH clincialtrials.gov, PDtrials.org, from another PWP.
What, if anything, did you wish you had been told about the trial?
Was the Informed Content process complete enough for you and/or a family member who may have gone through the IC process with you?
Were you given information about contacting a trial staff member when you needed to do so? If so, what was the response time, and did you feel that the staffer listened to you and took you seriously?
What did your expectation about the trial staff; the pricipal investigator (the physician you saw), the other medical staff, the testing staff, etc.

To all those 100+ who read this, thanks for at least reading this post.

Carolyn

Replying - better late than never!

i hope you are still receivig replies. if not, trash this:
1 - What motivated you to participate?
What motivated me to join a trial was my meds were not being effective.. I wanted to try something more radicall, hoping for a radical change. (my trial was a surgical one)

2. How did you find out about a trial that you participated in; e.g. physician's office, NIH clincialtrials.gov, PDtrials.org, from another PWP
I was actually on a waiting list for DBS, the subthalmic nucleus target, which is supposedo to address rigidity and slowness more than tremor (I don't tremor).

3. What, if anything, did you wish you had been told about the trial?
I wish I had been told that the surgical trial would knock me outo of qualifying for any other surgical triall and some others, also. I didn't even think about that.

4. Was the Informed Content process complete enough for you and/or a family member who may have gone through the IC process with you?
I reallly didn't knnow about the Informed Consent process at that time; iIthought I was signing t he necessary legal documents. The research nurse did most all of the explaining.

5. Were you given information about contacting a trial staff member when you needed to do so? If so, what was the response time, and did you feel that the staffer listened to you and took you seriously?
yes; Emory earned an A+ in this area. Any question I ha was very promptly answered in a reasonable time.

6. What did (was?) your expectation about the trial staff; the pricipal investigator (the physician you saw), the other medical staff, the testing staff, etc.
I assume this is "What WAS your expectation . . .". I didn't have anything with which to make a comparison, so I just expected them to tell me how to cooperate.

Comment: Now that I have thoroughly experienced the trial process, I am a little more demanding and understanding of the imporance of following protocol.

Peggy