Parkinson's Disease Tulip


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Old 06-17-2009, 07:05 AM #1
Debi Brooks Debi Brooks is offline
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Default PD Online Research

www.pdonlineresearch.org

Just wanted to be certain that folks are aware of this new site. You needn't be a member to view the discussions.

PDOR is only in its infancy (~3 weeks old) and its too early to claim its success, but those of you who are particularly interested in the science and the interpretation of various topics will likely enjoy the postings. Our hope is to elevate engagement around many topics, find new pockets of expertise, share data and techniques...basically up the cross-talk. Our intention is to use information from PDOR as input to influence our funding priorities.

Currently on the home page you will see an interview about iPS cells with Bill Langston. And, if you access "recent posts" you will see various topics from tobacco to deliver strategies for GDNF being discussed.

Debi
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Old 06-30-2009, 04:01 PM #2
Deep Brain Diarist Deep Brain Diarist is offline
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I haven't checked the site yet, but let me offer a general caveat. Beware of relying too heavily on information you get on ANY website. A good relationship with a movement disorder specialist is, imho, the best ticket.
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Old 06-30-2009, 04:26 PM #3
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DBD and Debi -

One attribute of Neurotalk seems to be that there are as many opinions are there are participants! I think the web site looks great, Debi - very interesting - of course, multiple sources, separately or pulled together, beats one perspective...as for the movement disorder specialist, I have reputedly the top person in the area but he is too busy and important to have any but the most cursory interest in his patients. I find that having read a bit first helps me focus in on what seems really important to me and break out of the confines of his clipboard questionnaire. And he responds really well to this. Before, he rattled off 15 stock questions ("Constipation? Hallucinations? Falls?") and was out the door with no discussion. Now I get charged for extended visits, but I have the sense of having connected. Web sites are still more informative, in my book. My doc just doesn't have the time and relationships aren't built in 15 minutes 2 times a year.
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Old 06-30-2009, 05:12 PM #4
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I think the fact that the site is hosted by the Fox foundation gives it some real credibility.
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Old 06-30-2009, 07:05 PM #5
Debi Brooks Debi Brooks is offline
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Default PDOR is not focused on current medical treatments or advice

Just to be clear, the site is not a source for treatment information but rather a virtual laboratory where ongoing discussions can/will take place about scientific research and drug development.

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Old 07-01-2009, 09:36 AM #6
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PDOR is not focused on current medical treatments or advice
Just to be clear, the site is not a source for treatment information but rather a virtual laboratory where ongoing discussions can/will take place about scientific research and drug development.


The way I see it, current medical treatments and advice are pretty limited - the future holds the - hopefully - exciting stuff. And I believe that hope is an important component of treatment. So by this logic, I'm more likely to ask my doc about new research than constipation. The little stuff my internist can handle in her leisurely and caring fashion while my neuro is a respected researcher in Parkinson's, really kind of a token clinician. Not an upbeat fellow except that he will sometimes concede that certain lines of inquiry hold promise.

Make sense to anyone but me?
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Old 07-01-2009, 09:55 AM #7
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I went to a neuro who doesn't consider research until it's on the market. yikes.

Wonderful site Debi, truly innovative and interesting. Lively discussion on GDNF going there.

a first and thanks for taking that risk. this one i understand completely - let the researchers talk first. we can ask questions and hopefully, expansion is in the picture for the future.


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Old 07-01-2009, 11:19 AM #8
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Default question on trial design

new question on trial design [many are aware i think about the phase II failures and how much placebo plays a role]. this question has one reply - it's a new question. but other replies from researchers will hopefully follow.

http://www.pdonlineresearch.org/rese...-what-are-stre

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Old 07-02-2009, 08:30 AM #9
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Default Patient Questions

Quote:
Originally Posted by Debi Brooks View Post
Just to be clear, the site is not a source for treatment information but rather a virtual laboratory where ongoing discussions can/will take place about scientific research and drug development.

Debi
Is there a way for a non-scientific patient can ask a researcher a question about an area of research? I know I have anoroxic brain injury in the STB, have iron deposits and deletions of exxons 3 and 5 in my Parkin gene. I do not advocate or am I involved in activism, but am very clear on how my illness affects me. Thank you.
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Old 07-02-2009, 02:14 PM #10
Debi Brooks Debi Brooks is offline
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Default How to submit questions to PDOR

There is a feature of PDOR that enables non-members to submit questions and comments on PD Online Research. Here is the link to the part of the site that explains how to do it.

http://www.pdonlineresearch.org/form...tions-comments

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