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Topic Parkinson's Survey? Go to previous topic Go to next topic Go to higher level

By GladIhavehorses On 2013.02.09 00:06
Does anyone know if there is a Nation wide survey that People with Parkinson's can participate in? Maybe if they got more data about PWP life style, family history ect.. it would help in finding a cure .

By makrivah On 2013.02.09 09:29
https://www.23andme.com
This is a detailed DNA based study/survey initiative. If you register as a Parkinson's individual, the DNA kit and access to the information is FREE. My PWP signed up this time last year. Filling out the surveys was very time consuming, but seemed thorough EXCEPT for the lack of questions about cognition. The survey gives you an opportunity for comments. I stressed the importance of adding those questions to get a more well rounded view of symptoms.

By jcoff012 On 2013.02.09 11:11
We did it too, and are awaiting the results. It was VERY time consuming, especially if you fill out all the Quick Questions. It is free for Parkinson's patients. They ask some really odd questions, but we answered them all...lol...Have fun with it!

By karolinakitty On 2013.02.12 11:13
There is no nationwide survey at this time... A friend of ours involved in APDA/LA did one a few years ago but nothing much came from it.
There is no national data base set up for PD. However, if you want to get involved in something, try the NIH (National Institute of Health) They do keep a data base on symptoms and such. They do clinical trials there also.
here is a link to them on our website:

http://www.parkinsonpanda.org/national-institute-of-health.html

They too do a genetic testing, lots more serious than 23andme.....

The NIH is free...they pay travel expenses, hotel and food.....first time you go there you will arrive the night before...be at the clinic the whole next day then go home the next...they give quite an exam and go over everything with you.....

Most of the PD groups are interested in research and finding a cure and not so much the "family" part of it. although NPF(national Parkinson's Foundation) is getting a little better now that they have their hotline.....

If you want to reach out to other families, social media like facebook is a good place to start....or like this forum, patients like me and other forums...

Our foundation assists the patient and doesn't get involved in research....we are gathering our directory of resources and our networking is worldwide....you can check us out at: www.parkinsonpanda.org

We share all the events of all organizations as we get them in.....

By parkinsonsDB On 2013.02.21 11:50
We have published a Survey online. There is a full preview of the survey on our website. The actual survey requires an anonymous registration. It takes a few steps to complete, but the data is important to aquire for research.

There are a lot of questions, most of them were never asked of me and I felt they should have been. They are tuned more to finding the source or trigger of Parkinson's than anything else.

We don't solicit money or send any type of propaganda. Our goal is to be a conduit between patients and researchers to help find the cause of this. Once we compile enough data we will use it to create private and direct funding to the most important research. This model will direct more than 90% of funds to research. This project can achieve great successs with patient participation.

I am young onset at 43 and firmly believe that working together on a large scale is the path to finding a cure.

www.parkinsonsdatabase.net

By jcoff012 On 2013.02.21 12:45
I will have time tomorrow to check on this, but it looks very detailed and asks some pretty important questions. My first question is, although you do not solicit funds, everything online takes money...who or where did funding originate? Thanks...very professionally done!

By parkinsonsDB On 2013.02.21 14:05
We've put a considerable amount of time into this. Our goal is to get research on the right track and figure out the causes which will lead to understanding and a cure.

I have funded all of the online content, it's really not terribly expensive and doesn't need to be. The largest investment is my time which I give freely because I am a patient and truly want to see a cure for this. The only other expense is press releases which I also manage. The Survey is actually a quite complicated open source software which took some time to figure out, but is has the best features available.

Many educational institutions use it.
Our key interest is privacy and non-solicitation of patients in any way, hence the steps required to take the survey. It's strictly for peoples privacy.
We do have direct connections to the Biotech Patent, Medical and Pharmaceutical industry. We do not accept direct funding from them either.

What we found out from the people in these industries was interesting:

1) They do not like using non-profit or grant funds because of the time it takes and the often imposed donor restrictions. These funds are quickly drying up for them also as people are donating less. (I've studied this extensively)

2) If they independently had funds, they would fund their own research. The big money for them is in the Patent, but most can't afford to lose large sums if they fail.

3) If tangible and sufficient data is available they would be willing to pay a monthly subscription for access to that data which would in turn give them the potential for direct unrestricted funding. This minimizes financial exposure for them almost entirely.

4) They approve of anonymously voting amongst themselves to determine which research gets funded and to what extent. They want research to be based on their input.

The most important thing is to collect the data, provide information and encourage participation. We are actively working on publicity and try to highlight important articles in social media daily. We're trying to spread the word and let people know that we have a genuine interest in finding the cause and the cure, not in fundraising or sponsoring the same dead end research.
There is no essence for us to grow beyond just a few people because this is actaully easily managed and the operating costs will continue to be extremely low. The funding collected can then be directed where it needs to go without restriction. There are obviously other aspects involved, but we have a solid plan to handle this.

There are no politics involved with us. Having Parkinsons' is quite a revelation in your life, it's really a matter of what you choose to do with it. This is where I felt my knowledge and skills would be best served.

Thanks for taking the time to read our site.

By jcoff012 On 2013.02.21 15:33
Outstanding response! I promise to investigate!

By karolinakitty On 2013.02.21 19:41
Interesting...I've been advocating for 5 years and almost all of that in social media, Facebook, Twitter, Linkedin, Google+ etc.....I have never seen nor been suggested to this site.....and truthfully I think I am on everybody's list...lol..then I saw you just got the survey completed on Feb. 18th 2013 (last update)

I did read the "sample" survey....a little complicated and LONG for most PD patients, but caregivers can fill it in...no problem...

I found after certain survey's and questionaire's my guy gets a little agitated...He actually got involved in putting together questions for one research group....simple...not too many choices....if more than 4 options..."lets skip that" was the answer or "you answer it for me"......

now playing devils advocate here.....

Is there really an "Unbiased" database?

Yes you have PD, and most of us here are caregivers...BUT...I can bet you that if my guy did the survey...then I did the survey...you would have 2 different results. We as carers, see things differently than the patient..it's a fact... just is...
Doctors "paying" into a fund monthly for research data? Even if they truly wanted "unbiased" info they would want some say into questions asked.

I know of at least one caregiver here who works for a drug company in research...I don't think your guidelines would work in the world of research.....
research would be focused on cause, treatment and prevention with reports coming in weekly? not reporting would disqualify? nope can't see it myself...

I see you put lots of thought into this...however in the real world of fundraising, research and "databases" in general...it's a tough go out there...

When we started our own Foundation I knew it would be tough...as ours focus is on the patients needs: medicines, utilities, food etc.....social services in a nutshell...But i really had this glorious idea that because we didn't go for research and education that people would be more willing to give...yeah right... I have had to turn down requests for help because our funding isn't what it needs to be....sad but true....most people want to give to the pretty boy faces of PD rather than the down and dirty...

I wish you lots of luck with this... Most of your questions are very similar to the ones our friend Maureen in CA came up with a few years back.....hope it works out for you....

By jcoff012 On 2013.02.21 20:45
KK, I am impressed...need to check further...but, this seriously not as tedious as the 23andme surveys! I will se if Carl will attempt it in the next few days...I am sure he will.

By parkinsonsDB On 2013.02.22 01:40
Your input is exactly what we want. The open communication is the key to making this work.

We know the initial survey is a bit long and we have put a lot of time into adding the links for anything we thought might be confusing. No matter how much we tried to condense it, we still couldn't get below 100 questions. The idea was to narrow down and expedite the areas of research we needed to focus on. The follow up surveys will be much shorter and concise. If there wasn't such a huge unknown to the cause we could have narrowed it down more on the first run.

We're working on the upside down pyramid theme on this. Broad based at the top until we narrow down the cause. We made most of the responses mandatory to either include or eliminate items of interest.
We have been very careful to make sure we were prepared to do this at launch. We activated Facebook and Twitter feeds only within the last month although the .com website has been up since June. We turned the survey on Feb. 18th and issued a press release on Feb. 20th. I have paid for all of this personally.

To make the database unbiased we found a program that makes it impossible to tie the respondents to their answers. That was very important. In addition to that, the data is what it is. It's proprietary open source software that does not readily export into other programs and the results cannot be modified, this is why educational institutions use it.

We do want the caregivers to help with completing the survey, but on the same note if the patient can complete it themselves we would prefer that. They know what their daily activities, exposure etc, are. This is given that the caregiver is not with them 24 hours a day. If they are, then by all means the caregiver or physician should help them complete it. We need the honest truth from patients, that is very important. That's the reason it is a patient survey and it is anonymous. We've all omitted information from our doctors, this is well known.

Coincidentally I contract for a Biotech Patent Attorney in my primary business. He represents some very large international Pharmaceutical companies in the industry. We also have direct connections to the NINDS ad NIH. I contracted with him long before my Parkinson's started. We also are affiliated directly with Physicians.
We took the time to ask questions of the physicians, researchers, financial consultants and also attorney's on what would be an acceptable subscription fee for them.

What we came up with was $20 per month per neurologist or researcher and $10 per month per physician. If you calculate the numbers it would be $240 per year for Neurologists of which there are a total of around 15,000 in the U.S. alone. That would be 3.6 million dollars if all signed up.

The physician numbers are indeterminable, but the information they would receive would be relative to diagnosis only. Their subscriptions would only be added funds. This does not include researchers. So really, that's a low estimate when you look at it from a worldwide perspective. Our total operating cost would not exceed $100,000 at any time. So that leaves a huge dollar amount for unrestricted funding to research.

The research would be funded directly on contract and Patent rights withheld until completion of the research. It will be contractual, no exceptions. There are many others out there that will agree to the terms if they don't want to sign on. The value of a Patent to cure Parkinson's is approximately 3.75 billion dollars. It's a trophy for any scientist, this is where the payoff is for the pharmaceuticals.
The researchers do get to submit questions based on survey results, absolutely. We can't do it without them. The funding is decided by the researchers in the same way that the data is received from the patients. We are patenting this process for use in any disease.

We know a lot of people that work for the drug companies as well as the CEO's and deal with them frequently.

This is not "fundraising", you would see non-profit (line our pockets) written all over our websites if it was. We offer no options for donations and don't solicit funds.

It is certainly a tough go I would agree with that. The key is being able to give something back. Which is what we will do.
This project is created out of need, It is backed by any patient that I talk to, researchers, attorney's and financial advisors in the industry. We did not come unprepared.

You are so right about asking people to give. That's why we don't ask and won't accept anything from patients. If we can't find a cure for this, the very least we will get is better treatment and prevention.
Believe me, we have looked at every aspect and angle and we have the right support. We are also preparing to move on Congress. This has gone on long enough. We have spent almost two years putting this together and it will succeed.
We sincerely hope that you will join us in our quest to find the cause and the cure for this despicable disease.

There can be no more self interest or use of foundations for financial gain regarding this. It doesn't bring results.

This project has been created by myself (a Parkinson's patient), an LPN of 25 years, a higly respected Biotech patent attorney and our personal support groups at no cost to patients.

I hope that I have been able to clearly respond to your questions. We need your support and help in spreading the word.
Our motto states "It's time for a change" and quite frankly it is.

By karolinakitty On 2013.02.22 07:49
well...I put it out there for our twitter followers, friends and nationwide volunteers, not as a recommendation, but as "you give me your opinion" I'll let ya know the feedback I get.

And by the way...I wish we could "line our pockets" with our fundraising....even as we grow we want admin costs to stay in the 5% range.....so right now I do the job of 15 people and get a check every week for $0..plus there are others nationwide that get $0 too....
we don't go on cruises and when we do go to a conference or seminar..it's not on the foundation...we just aren't like that...
That's my issue with some of the big ones....

By parkinsonsDB On 2013.02.22 08:55
We appreciate you putting it out there. As I said, we want the feedback and communication. We are flexible and always open to feedback and suggestions. This is designed to be a collaborative effort.

As for the non-profits, we are on the same sheet of music. We considered doing this non-profit but after thoroughly reviewing the large foundations financial statements we knew that we wanted no part of it.

The money spent on fundraising activities, entertainment, travel, direct mail and other expenses was disturbing if not down right sickening. What was the most bothersome for us was the amount actually contributed to research. We found that some of the large foundations committed over 75% of their research funds (which actually was a very low percentage when you run ALL the numbers)to one researcher and that the studies resulted in failure because they weren't conducted based on sufficient empirical data. This is just wrong and it's cronyism. They toot their horns that they spend 80% on research and that's just not true. No need to mention any names as we all know who they are. We already know that they will not support our effort which is fine, we don't need their help.

We do support the efforts of honest non-profits and we find it unfortunate that they are simply outspent by these groups that require a large board of directors to operate. They spend more time competing with each other to gather funds from people that are ill than they do fighting for their cause. This is reflected in the drop in donations as people are not seeing results from their giving. It's really disappointing.
It's a tainted and broken system and definitely on our agenda to address, but we have to direct our efforts to the initial phase of this first.

I will be going back over our links page and reviewing financials for the groups we have linked to. I've already removed some just this morning. Your input as well as anyone else does matter.

By jcoff012 On 2013.02.22 18:39
We found the survey to be simple to take and there were some interesting questions. W view this as a helpful way of participating in research.

To be honest, we were discussing the survey before he took it, and he said, "You know, why would anyone NOT take it? They have in place the software for anonymity, which is even better than 23andme."

We recommend others take it...it is 115 questions for the first survey, but it doesn't have to be daunting...you can fill it in over time.

Jane


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