Ok - new thread - important topic. Many people post here & many more lurk.

Fact: In order to get a new treatment through the drug approval process, it must include clinical trials on humans.

Fact: There are clinical trials for all stages of PD and for many symptoms. There are trials for early stage PD and trials for late stage PD. (Fewer for the middle ground...)

Fact: There are trials for symptoms of PD, for example: depression, restless leg syndrome, hallucinations, etc etc.

Fact: Fewer than 1% of pwp participate in clinical trials. Because researchers have trouble finding participants, this increases the time it takes new drugs to get through the clinical trial process (and to your drugstore).

Fact: There are information websites that will answer many questions about participatingin clinical trials. Two that I know of are:
http://www.ciscrp.org/
http://www.pdpipeline.org/

And websites listing trials in the U.S. are:
http://www.pdtrials.org/
http://www.clinicaltrials.gov/


My story: Seven months after my diagnosis, I joined a clinical trial. I was in it for two years - unfortunately it failed. But it provided scientists with valuable data. And it enabled me to participate in four other trials (two ongoing).

Why I work to promote clinical trials: I don't think the system is perfect, but it's the only on we've got, so I support it by participating in trials and by speaking to support groups about participating in clinical trials. Some people believe the system is so flawed they won't participate. That saddens me, but don't let that hold anyone back from posting your feelings on this thread! Maybe you'll sway someone to your point - or maybe I will, but let's discuss it.

Let's discuss this important topic.

most sincerely,

A couple of months ago, I represented pdtrials.org at the AWARE conference in Dallas. While I was there I was part of a panel that talked about personal experiences in trials. It's written up in their quarterly newsletter. (link below)

http://www.ciscrp.org/quarterlyupdat.../article1.html

regarding clinical trials, call me selfish, i won't mind - but i take one look at the side effects of levodopa and know that i am a long way from becoming part of any clinical trial of an experimental compound.

I am in good enough shape that i lack any incentive to put myself at risk like that.

regarding any clinical trials for depression in PD, a researcher specializing in depression and PD was asked on the patientslikeme pd forum where the evidence was that had started this furor of speculation that depression is a symptom rather than a reaction.

here is his response:

"In terms of the evidence most of the studies so far have been observational studies of the symptoms of people with PD as compared to say other older people with a diagnsosis of depression."

that's it.

for that reason, i would never participate in a clinical trial for depression in PD even if i *knew* it was safe, because it is my opinion that any money being spent on clinical trials for depression in PD would be FAR better spent on the clear symptoms of PD, i.e., motor symptoms, for which we are still in dire need of an effective symptomatic treatment over the long term - by which i mean until a cure is found or until we reach the end of the average lifespan in the US, which is 77 years old (that is 44 years away for me), whichever comes first.

the same goes for *any* trial spending money on non-motor symptoms - claims that they can be the most debilitating for PWP are not supported by anything i have read - in fact, i wonder what studies those claims are based on - if anyone knows, please let me know

Boann, Thank you for posting. I thought I'd be the only person posting on this thread... LOL again... and again.. and again...

If you are not yet on meds, you (and others like you who are NOT on meds yet) are DESPERATELY needed to participate in clinical trials for substances that may be neuroprotective.

That's what many of us are looking for - a way to slow or stop the progression of the disease. But they are only accepting pwp not on meds yet.

Regardless of your choice, I respect your decision. Kind regards & wishing you well,

trial for creatine

trial for green tea

JeanB; This is my story

I was diagnosed with PD in April, 2003. Upon diagnosis I did two things. I looked into local support groups and I called up the Columbia University Medical Center about joining a clinical trial. I found a support group nearby and attend it every week. My initial trial was PRECEPT 1347 which has since been discontinued. I then requested that I be put on any available trial. I am now on three. Please note that my regular doctor was not involved in any of these decisions. He only became aware of them during my yearly appointment. He wasn't too pleased but there wasn't much he could do. I have since come to believe that your GP is one of the impediments to enlisting more patients for clinical trials. Some of them may have difficulty with sharing control of the patient. For example, my PD doctor requested a certain medication for my blood pressure contrary to my GPs recommendation. When I attended the Parkinson's Disease Conference in WAshington DC I found a number of patients who would not join a clinical trial because of their GPs advice.

All the best,


Lloyd

Lloyd,

THank you for your story - I participated in the same trial. And we're probably in the follow-up trials as well.

The first neurologist I went to didn't know about the CEP trial either. I just asked him if I met the criteria. I did, joined the trial, and then found a movement disorder specialist (MDS). Unfortunately MDSs are not always available to PWP. I was lucky in that regard.

It's too bad GPs are so uninformed about the importance of clinical trials!!! They are part of the problem, that's for sure.

Good luck to you!