This article below from the NYT lays out many of the challenges that plague drug testing. I remain convinced (as many of you are) that we need more patients contributing more data --- it is likely the only way to better overcome persistent failure.

Many here are already engaged/active...but what does it take to increase engagement by the multiples needed? How can we do better? MJFF is working on new web-based tools for patients to provide more data (hopefully to debut this Fall/Winter). Peer-to-peer discussion/encouragement is our best hope I believe.

http://www.nytimes.com/2013/07/14/op...nted=1&_r=0&hp

Debi

Debi, many of us responded to your previous post related to this subject. I agree that we need much larger sample sizes so we can get to homogenous sub-samples, which are needed. Peer-to-peer discussion will certainly help and, as patients, we need to improve on how we can accomplish this. However, I strongly believe that the best hope is more involvement from our primary PD doctors. I think that most doctors are not aware of the current studies and are not doing enough to get their patients to participate. Maybe it's an issue of liability. But, they are the primary link to the PD patient, more so than these forums. The docs need to advise their patients on the importance of participation and guide them to the appropriate research study.

Just my opinion. Your work is greatly appreciated.

Gary

Debbie, one of the problems is that by the time people become proactive there are many things that exclude them from studies. i.e. they by that time are not de novo. Other factors, the exclusion factors actually are the exact thing that you would find in pwp, so the trial is designed for an almost unfindable minority of people.

My idea on this, as someone who has looked at the trialfinder in my own country, and found not a single one that I would be eligible for, is that if they want participants they are going to have to widen the criteria. Patients could help with this. But it needs having patients there in the planning stages of trials, to say, well, if you do that, you are setting up barriers to participation that will be very hard to overcome. This is the message that needs to go to trial designers.

In my opinion, clinical trials need to have some hope of an immediate benefit to the participants. Add this and you will get a lot more volunteers.

RudeI have contacted every research trial sent to me by Foxfinder. I have 2 mutations of my Parkin gene, I have a positive FDOPA Scan, and use sinemet for livable symptoms. I do not qualify for any tests Foxfinder has sent to me because of my DBS. Most researchers insist on having the ability to perform a MRI scan or DAT scan.

Vicky

I am very excited by the proposed MJFF data collection system. The power of the MJFF brand name is such that I expect that within a few months 10000 people will have enrolled, enough to give some serious data mining opportunities.

I hope the data will be open to everyone to analyse.

My experiences with PDMeasure, which covers similar ground, but with far smaller numbers of participants (96), may be of interest.

What have we learnt so far:

1. The learning effect of repeatedly taking a symptom measurement test, in our case the side to side tap test, is more powerful and goes on longer than expected.

2. Only 9 healthy people have enrolled, clearly an insufficient number of controls. Effort needs to be put into attracting them.

3. A distinction must be drawn between the reporting of people's condition and even minor interventions to change it. The latter requires a stronger ethical framework. I've been unable to get an ethics committee formed. The moral of the story is: get the necessary organizational structures in place before releasing.

PDMeasure can be found at:

http://www.parkinsonsmeasurement.org/PDMeasure/

John

Another thing that will not be probed and discussed and brain-stormed at the World Parkinson’s Congress in Montreal.

“You must not take any Parkinson’s drugs, or any other drugs, or ingest any food or any liquid other than water, for 12 hours before your appointment. You must be able to remain perfectly still during the scans. Any movement will result in the scans being unusable.”

What is wrong with this picture?

“You are responsible for your own transportation to and from your residence and the 3 test sites.”

(Volunteer lives 50 miles away and his driver’s license was revoked, and he is unfamiliar with the city).

He managed to get a ride to the city and was in time for the 8:00 a.m. appointment, having taken no pills for 12 hours, but then spent four hours in the waiting room. No pills for 16 hours.

At noon, two bored and blasé college students arrived and gave him the childish cognition and balance tests. Shown pictures of animals and asked to name them. Recited imbecilic stories and asked to repeat them. Pulled backwards to see if he could regain balance. And of course, lots of finger tapping.

An hour later (17 hours without pills), a lab technician came and said get undressed, put on this gown, remove your wedding ring; lie down, stay perfectly still. And admonished him aggressively when he could not stay still for the scans. “It’s a complete waste of time if you don’t stay still.”

Two college kids and a grumpy lab tech. At no time was there a doctor or a scientist present

The volunteer specifically asked to know the results of the testing, at least his own results. This was refused. They said it was never done. They would not even release the results to his doctor. Proprietary information.

His father had volunteered for World War II. His grandfather had volunteered for World War I. He thought, this was his war.

He thought he was joining something. He thought he had volunteered for a fight to the finish. He thought they would come out of the trenches and make a frontal assault. A band of brothers. Willing to sacrifice so that future generations would be free.

That was four years ago. He never heard from them again.

He never knew their names. He met no other volunteers.

As far as he knows, the study was never published.

“I volunteered because I wanted to be part of something bigger than myself. But they showed me how small I am.”

Nobody wins a war that way. Just ask Alice, when she is two feet tall.

are you trying to start a discussion bob?

A recent Zogby Poll shows that most patients are open to participating in a clinical trial if they get their physician’s recommendation. Over 70% of patients would consider signing up for a clinical trial if their doctor said it would be beneficial. Yet, only 24% of patients say they have heard about clinical trials from their health care provider. The main reasons for lack of patient participation is lack of knowledge and lack of trust. The best way to overcome this resistance would be greater participation by doctors and other health care providers.

http://www.researchamerica.org/uploa...icaltrials.pdf

"Lack of trust."
I try to build trust in the drug approvall process everywhere I go (and where I don't go, too). lol

WPC shouldnt be a place to air our indifferences - it should be (and WILL be if we all cooperate) a place to build patient empowerment. If you think mooney talks, try pulling the patient out of the drug discovery'approval process!
I used to jokingly say to my pprincipall friends, "If it weren't for those unruley kids and disgruntled parents, we might be able to have school!" Duh!

Bob, it's like when you introduced the AllTrials.org petition - I had to check it out before I entrusted my signature.

Debi - one minor detaillll has to do with the design of surveys. They usually make it easy to resond, but think if you had PD. We need BIG targets to mark. (I like those with one question presented at a time..

We need surveys that let you stoop and re-enter without starting aalll ovoer again.

We need to have humongous spaces to fill in personal info and be sure it is saved for the next time we visit.

And do surveys have to know the color of your toenail polish? Just ask the important stuff!

And plelase assume everyone understands that surveys should be at about 8th grade reading level, especially when writing the important stuff (like inclusion/exclusion criteria.)

And on purpose I did not go back annd correct my typos (well I did a couple)
See what I mean - keep survey requests smallll in # of questions and infrequent requests.

Would you please pass that ontoo the survey designers.

I'll be at WPC (Lord willing) bu only serving an advisory council, but I romise to give it 110%!

Oh, and I want too take Aunt Bean with mme, but scholarhips are gone (or so I think). Anybody like to spoonsor the Queen of Bean Acres?

Thanks
Peggy