[paula_w]

1. Do you know what the DOR is?

a] the pdonline research site by MJFF
b] clinical trial rights and responsibilities for Parkinson's reseach
c] proposal for patient department of research
d] i only know because i see it in another thread or i don't know

2. See if you can find it online. Post a link to it and tell how long it took to find it.


it doesn't do anyone any good to fib cause you think you should have known it. i don't know how all of you could know about it. you haven't been here long enough and remember, if we do this, we need numbers to be accurate.

no judgements will be made. but i don't know how to turn this into a poll.

and i've been here ten years.
paula

thanks folks!

[Conductor71]

Paula,

You're the best. I avoided interjecting when you first asked Sheryl the status on this document. I had no idea that such a document existed, then I thought, wait- a patient's bill of rights drafted and shared by which PD organization? I checked the Pipeline to see if their Bill of Rights was somehow connected and at their site when hyperlinking received the Error 404 Page not found message. Isn't this telling?

Anyway, this brings to mind the usual number of questions:

- What organization is responsible for the DOR?
- Who wrote it?
- Furthermore, why aren't PWP represented by only one non-profit group?
-Why aren't patients encouraged by their neuros to participate in research; especially the highly desirable dopa naive patients?
-Why don't the major PD organizations publish and promote patient participation in research on their web sites, through brochures in doctor's offices, etc.

Until I joined this forum I had no idea that participation in PD research was so low. I felt cheated by my neuro, who conducts research; why didn't he suggest it when I was newly diagnosed stressing how there is a need for dopa naive participants. Instead, I was sent on my way with a heavy heart and a bag of pharmaceutical samples. I wouldn't have felt "ready" right away but being given the otion to participate would have empowered me, I'd have embraced it as giving me a chance to "fight".

There clearly needs to be an effort among the collective PD organizations and clinicians in educating newly initiated PWP on research. I suspect that doctors are reluctant to promote participation because then the stress is on the fact that our condition is incurable, when they would rather stress that it is treatable.

I think a large problem stems from having no one main PD advocacy group (instead we seem to have several competing interests)? Therefore, we have no clear, guiding voice advocating for us. How do we change this? I'd like to see the DOR as a part of a larger PWP or patient manifesto.

Thanks for seeing that this merits its own thread.

Laura

[Stitcher]

Laura, where on the PPP website did you click and receive the error mesage?
I can't fix it, 'cause I can't find it.

Carolyn

[Stitcher]

Found it in about five minutes. I love puzzles!!

In 1961, Dr. [name] established the Division of Research (originally called the Department of Medical Records Research) and in 1962, DOR received its first grant from the US Public Health Service to automate the multiphasic exam. Three years later, the Health Plan’s Oakland and San Francisco clinics began offering Automated Multiphasic Health Testing (AMHT) to all members.

As part of the AMHT, Dr. [name] devised a simple process for obtaining each member’s medical history, using a self-administered questionnaire that protected patient privacy and a computer to tabulate responses. Each member was given a stack of punch cards, and on each card there was one question. If the member’s answer was “yes,” it would be placed into one box; if it was “no” it was placed in another. The cards were then fed into a reader. For the first time, doctors could receive a printout with a patient’s full medical history, as well as printouts with the results from other AMHT testing.


- Furthermore, why aren't PWP represented by only one non-profit group?

PDF does promote clinical trials by way of www.pdtrials.org , and ther is one link regarding "Learn if clinical trial involvement is right for you" on the regular www.pdf.org website.

-Why aren't patients encouraged by their neuros to participate in research; especially the highly desirable dopa naive patients?

A good question. Only those neuros were are trial sites usualy recomment/request patients become involved.

-Why don't the major PD organizations publish and promote patient participation in research on their web sites, through brochures in doctor's offices, etc.

Another good question. The only publications I am aware of are those support and promoted by PDF.

[jeanb]

www.pdplan4life.com/declaration-21aug08.pdf

[Stitcher]

Lisa Croen, PhD is the name missing in my post above. I didn't want to give it away if someone else was trying to find the answer.

http://www.dor.kaiser.org/external/Home_Default.aspx

[Stitcher]

Well, when I saw "DOR" I thought literally. The answer is Declaration of Clincial Research Rights and Responsbilities for People With Parkinson's, the DOR, as we loving used that acronym during the two years we spent writing the darned thing.

And Jean has it correct too...above!!


The answer, and Paula verified this is correct:

Declaration of Clinical Research Rights and Responsibilities for People With Parkinson’s

Clinical research is essential to the development of new therapies and treatments for Parkinson’s disease. Yet, due to a number of factors, including a lack of awareness and understanding of the research process, only one percent of people with Parkinson’s participate. This is far below the number needed, delaying many promising trials.

Read the entire Declaration!