PARKINSON'S REGISTRY RE-VISITED

[ronn]

A week ago Kat00 asked for a show -of-interest in developing a program which would create a list of persons with Parkinson's Disease. The response was encouraging. The following is a synopsis of possible program features as discussed with Kat and from responses of the group:

Participation in the program would be voluntary. (would not involve gov't. or medical records).*

Participation could be self-initiiated by PWP with provision for monitoring and for deletion of erroneous entry.

Entries could be computer sorted alphabetically by last name.

The program could create two lists, The first might identify persons on the planet Earth, living with Parkinson's Disease. Information requested might include:

Last name___First name___Country/(State/,Provence)___Year of Diagnosis___

The second list would pay tribute to persons who died with Parkinson's, either recently or in the past. An entry could read: IN MEMORIUM: Last name___First name___------"Free text*---Died with Parkinson's__Date______-

The "free text" could be used for brief comment, (loving husband/wife, or Parkinson's Movement nickname.)

*In her comment, Hikoi informed us that Sweden already has a national register of PWP

Kat pointed out that in the US the program would haveto be radified by all 50 states individually, an impossible task.

Many of you have indicated a wilingness to help. Anyone with computer programing skills?

[compucure]

Michael J Fox Foundation?

[WayneP in reply to compucure]

MJF is only about drug research. I have talked to them and they will tell you in nicely if it it is not drug related I.E. raising money for research, doing drug trails, DNA research, etc, they are not the interested.

Wayne

[Hidden]

Is it not a bit pointless? Why would anyone want to compile a list of people with PD what about the ones who will not participate?

Surely there are organisations out there who know how many people have it .

I am really not convinced of why someone wishes to do this?

What is the reason for doing it ?

Anyone explain?

[Kat00]

oldtyke,

Yes there are statistics, but they are numbers, not people. In the US, These numbers are gathered from the projected economic impact (medical costs, extended care etc)of Parkinsons disease on the economy,

A list of people living with Parkinsons makes it about PEOPLE not about numbers. When you can demonstrate with pages and pages of names, just how many people (and for US congress think VOTERS) are affected by PD, funding for research becomes more available,

The general public may have heard of Parkinsons diseases. They may have seen Micheal J Fox on TV, but they have no idea how many of their neighbors, friends and relatives suffer with PD.

I hate to draw this comparison, but if you think back, before people went public with AIDS there was no funding, no education, no treatment. People with AIDS did not want to be identified.People with Parkinsons tend to stay out of public situations and appear as normal as possible.The general public thinks PWP are just shaky or old or tipsy.

The list is a chance to stand up and be counted!

Educate the public on how wide spread PD is throughout the world.

Educate political leaders on how many lives(voters) are affected

Move philanthropic people and organizations to fund research

[froggatt55]

Whilst I applaud the idea of focus groups, lobbying, bringing greater awareness of our condition, I kind of feel we have missed the boat. We have national bodies in the UK such as Parkinson's UK and The cure Parkinson's Trust, the latter was set up by people with Parkinson's and is the more aggressive organisation I will come back to that

In the US you must have the equivalent of Parkinson's UK and of course you have the Michael J Fox Foundation and of course we all have access to the World Parkinson's Congress which takes place every 4 years (Glasgow, Scotland last time and is in Canada this year)

I said I would revert to the Cure Parkinson's Trust - I couple of months ago I was feeling very cynical about the urgency and the focus of Research into Parkinson's and wrote a paper entitled " Parkinson's Research - a Paradigm shift to focus on what the Patients Need". I showed it to a few folk (I am a Scot) but the consensus was there were too many vested interest to permit such initiatives so I dropped it BUT last week I read that the Cure Parkinson's trust were hosting a conference with the pharmaceutical industry in April to discuss how they could better coordinate and focus their efforts

I am happy to discuss how better we communicate however

[froggatt55]

Whilst I applaud the idea of focus groups, lobbying, bringing greater awareness of our condition, I kind of feel we have missed the boat. We have national bodies in the UK such as Parkinson's UK and The cure Parkinson's Trust, the latter was set up by people with Parkinson's and is the more aggressive organisation I will come back to that

In the US you must have the equivalent of Parkinson's UK and of course you have the Michael J Fox Foundation and of course we all have access to the World Parkinson's Congress which takes place every 4 years (Glasgow, Scotland last time and is in Canada this year)

I said I would revert to the Cure Parkinson's Trust - I couple of months ago I was feeling very cynical about the urgency and the focus of Research into Parkinson's and wrote a paper entitled " Parkinson's Research - a Paradigm shift to focus on what the Patients Need". I showed it to a few folk (I am a Scot) but the consensus was there were too many vested interest to permit such initiatives so I dropped it BUT last week I read that the Cure Parkinson's trust were hosting a conference with the pharmaceutical industry in April to discuss how they could better coordinate and focus their efforts

I am happy to discuss how better we can communicate however

[lindah]

Over the last few years, bills have been introduced in the U.S. Congress to create a national registry for PD, and most recently a database for all neurological disorders. The bills have never been voted on by Congress .

Two state registries have been started -- in California and in Nebraska, although funding them has been a struggle.

I do agree that it matters to find out how many people have PD and where they live. This data could help identify environmental causes, and also can be useful when advocating for more research funding

[Lindylanka]

There have been many suggestions over the years for a registry of PwP, and there is at least one neurological disease initiative that was to have gone ahead in the US. Sweden is a small country, and therefore it is easier, given its health system. People who have gone into the specifics of doing something like this have found that it is actually more difficult than it seems. For one you would need some kind of funding for it, there are possibly a million people in the US alone with PD. In the UK the data may exist already in the form of electronic records, but it is uncollated. If Patients were to do this what purpose would it be for? If just to collect names and dates of birth little data could be extracted other than age-related incidence. For it to be a resource of value it would need to go further, and collect date in the way that BioBank does. This would need secure systems, back up, and more importantly a way of interrogating the data, which means that someone would have to intelligently design the whole thing. If there is anyone out there who could take on the Herculean task it would be welcome, as it would probably reveal a lot of data that would help us understand PD better. Eventually electronic records will probably take care of this, but mass collection of records is not always trouble free as those in the UK are probably aware of, bad implementation of systems is probably worse than none at all. One of the biggest problems is private health care system where data sharing is not the norm. In these situations arguably either the health care provider or the patient would have to volunteer the information, meaning that any data would be flawed because of the absence of those who didn't.

[marmaduke123]

while i agree with the whole concept and it would give a better idea of numbers and locations of pd suffferes, as in countries, i hate the idea of it going via facebook. Rather it was somehow compulsary for each neurological dept or doctor to enter names into a register as they do with contagious diseases or even better through the census adding a question regarding state of health