pnschmidt said

"We're piloting the project right now. The phase-I protocol was developed before I joined the foundation, and it did not include patient involvement in the study design. Still, much of the data is patient-reported, and so no one can succeed without engaging the patients (and caregivers) as stakeholders. Going forward, I have experience with projects at Kaiser Permanente where we launched several disease management protocols where patient input was integrated throughout the process, and I hope to bring that model to this project. Also, I've been involved in the Health 2.0 conferences and the participatory medicine group (led by e-Patient Dave) and am leveraging that experience in thinking about study designs. Perhaps we can accelerate this by including participatory medicine in our next research funding opportunity."

Most excellent and very exciting! Your previous involvement with Health 2.0 and e-patients.net is good news for patients; I'm inclined to think you "get it" - a great asset for NPF and this project - I hope you will continue the conversation with us.

I agree that too many registries will water down the effort. And thank you for pointing out the differences in those initiated (especially the info about research-acceptable registry statistics).

In case anyone wonders why the Ali Center registry didn't make it, I can tell you one major reason - it was a survey along with a registry. The patient was to complete the survey - and it was entirely too long. I forget how many pages it was, but I stopped filling out the follow-up questions because of its voluminous approach. I know that's not a good excuse, but I hope future registry information seekers keep this in mind.

Peggy

Peg - sometimes I wonder if we are using the word "registry" when "database" might be more accurate. To me, a registry implies something official and mandatory while building a database of collected information is something very different. And while I agree that I wish there could be a centralized agency collecting all of the data in an official way, I'm still glad various attempts are being made - and I hope the data will be shared.

It's too bad the Ali registry failed because the survey was too long - more information is better than less. The new registry being set up in Seattle required about a 45 minute phone interview - I did it willingly - perhaps it was easier to talk while someone else wrote!

I don't redcall readig anything about the Ali Parkinson's registry failing. Is there more info on this? Here's a link to their website
http://www.maprc.com/cm/content/registry.asp
And they do call it a database, as Carey suggested.
I recently completed an online update to my records there. It took only about a half hour (updated twice a year) and i thought all of the questions they asked were relevant.

It appeaars there will be various PD registeries or databases in the future. Hopefully they will collaborate in design and data collection and they will share i nformation with one another. And with us!

I think that most researchers feel that they already have pretty good data on the regional and demographic issues around the incidence of Parkinson's. Just knowing zip code and occupation won't add a lot to the picture. What it could add is more detailed knowledge of the frequency, which will be used by NIH in determining budget priorities. Richard Smeyne gave a talk recently where he said cited conjecture that if we all lived to 110 years old, we'd all get PD. His hypothesis is that it typically takes two other factors to bring the age of onset down into the range we typically associate with PD. For example, a genetic propensity and pesticides together might trigger young onset. It is important to be able to connect incidence data with other variables, and typically we make those connections by collecting all the data together. An incidence/prevalence registry requires other data -- medical, environmental, etc. -- to give this insight.

I am very focused on care, and so I like to see therapies and outcomes collected together. In fact, we've seen that by simply asking neurologists, "did you refer a patient to a physical therapist?" rates of referrals go up.

I wouldn't want to denigrate any collection of information, though. The Nebraska registry is simple, but it is quite feasible and sustainable and should generate valuable information. For example, Smeyne also presented at the World Federation of Neurology data suggesting that exercise protected animal's brains from neurotoxins. I'd be interested to see long-term data on incidence if coupled with, say, data on community initiatives to promote physical education. Perhaps there are communities in Nebraska where physical education is a priority in the schools. Perhaps there are communities that host annual distance running events. It would be interesting to see the incidence of PD in those communities contrasted with other communities that are similar. Any data collection effort offers opportunities for discovery that wouldn't exist without that data.

I think that this thread brings up some good questions and I hope that I can clarify on the legislation currently being considered by Congress (I also hope to learn more about the NPF registry in the future!). The legislation would establish a national registry that would gather data from existing data sources. The Agency for Toxic Substances and Disease Registries (ATSDR) would look at a multitude of data sources, including, but not limited to, Medicare, Medicaid, private insurers, Department of Veterans Affairs, and existing registries, such as California’s or Nebraska’s.

The goal is to establish a national data collection system that would provide a more accurate picture of Parkinson’s within the US, including how many people have Parkinson’s disease. As I understand it, the information gathered will be used to better understand who gets Parkinson’s disease and what factors affect the disease. Scientists and researchers will be able to access the national data to hone in on areas where additional research is needed. The national registry, at a minimum, should help uncover and inform promising areas of research. This is expected to be an invaluable tool for researchers. For the most meaningful research to proceed, a comprehensive dataset would be much more valuable than a patchwork of piecemeal datasets of at best varying quality.

ATSDR has been working on the development of registries of this kind for several years. Through several pilot projects for amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS), the Agency has evaluated various data collection methodologies and has established that developing useful, nationwide data systems is possible for ALS, MS, and other neurological disorders, like Parkinson’s.

I hope that people will tune into the Parkinson’s Action Network Forum Webcast on February 17th to learn more about the legislation and the need for this type of national data system. The first session of the Webcast is dedicated to this topic. You can register for free and learn more**

A registry (to put this simply) is a collection of information; a survey is an anaysis of information. I guess you could use them interchangably but I think they should be kept separated. You can always "survey" the names collected from the registry. (Confused yet? lol)

I say it "failed," because nobody seems to be acknowledging it other than the Ali Center. Here we have legislation to set up another one partnering with MS, and we learn that NPF is doing one, also.

Here's a link to the registry at the Ali Movement Disorder Clinic and an explanation of what they are doing with the information.
http://www.maprc.com/cm/content/registry.asp

I am not sure when it started, but it's been open registration season for at least a couple of years. When you sign in to the registry then iti becomes a part of a database.

The purpose of the Registry is to facilitate the development of new therapies and healthcare services to improve the quality of life for people with PD. It will also accelerate the process of informing participants of more effective treatments.


Here's what you are consenting to when you register:
(from their website)

Please read the following informative statements before you sign your consent:

• By being enrolled in the Registry, you agree to be notified of research studies for which you may be eligible, but you are not obligated to enter any study.
• You will NOT be excluded from future studies if you decline to participate in a specific study or project.
• The data you provide may be used in scientific publications, in summary form only as aggregated data with all personal information identifiers removed.
• Your name will not be released to any individuals outside of the Registry Management Team without your written consent, nor will it be sold for advertising or fund raising.
• Participation in the Registry is completely voluntary and is of no cost to you.
• You will continue receiving additional questionnaires every six months for purposes of updating the Registry and gathering new information.
• You may receive the Southwest Parkinson News report free of charge if you wish (Unfortunately, we can only mail within the United States).

That's a LOT to commit to - I would venture to say that they lose some people due to this.

Peg

to add to JSheridin's post above, go to this link to register for the PAN webcast: (You may recognize some people in this video)

http://www.thepanforum.org/video.html