NPF starts a registry
 

This was buried in a story about Cystic Fibrosis in the New York Times today:

"Using the cystic fibrosis registry as a model, the National Parkinson Foundation has just started its own registry. It plans to enroll thousands of patients, said Joyce Oberdorf, the foundation’s president. “There are nearly one million Americans with Parkinson’s disease,” she said, “and they have multiple symptoms that can combine in multiple different ways.”

Preliminary data in the new registry showed that patterns of treatment were not consistent and that patients had far more additional diseases and cognitive issues than expected, the foundation said at the World Federation of Neurology meeting last week."

(just looked at the thread post - WRONG emoticon - should have been an exclamation point!!!!!!)

great
 

'how does this compare with the registry at the Muhammad Ali Center (an npf center of excellence)?

Jean asked a good question: "'how does this compare with the registry at the Muhammad Ali Center (an npf center of excellence)? "

Are we going to end up with as many different registeries as PD organizations?

I think it would be more useful for all the orgs to work together with PAN to pass The National MS and Parkinson's Disease Registries Act. see:
http://capwiz.com/pan/issues/bills/?bill=13110561

many unknowns
 

Linda, Jean, et al -

I was extremely surprised to read this in the Times; I went to the NPF website and found nothing about a registry. I have more questions than answers right now!

Curiouser and curiouser
 

Excellent question, Linda. Unfortunately, I think your assumption is correct; especially if we have two organizations with their own registries...my jaded self wants to believe it's for the common good, but I suspect there may be some data collection going on to help better organize the organizations- I know that there is no profit motive, but collecting data does help them get a demographic profile of their constituents.

I've been curious about what is going on at the National Institute of Health PD-wise and stumbled upon this. I think this is the model we are looking for. It's the Parkinson Disease Data and Organizing Center (PD-DOC). It looks like a national clearinghouse for data on PD funded by the NIH and housed/managed by the University of Rochester. I'm going to explore even more, but this seems just what we need!?! So how does the National Registry just passed in legislation differ?

Laura

http://www.pd-doc.org/AboutPDDOC/Mis...2/Default.aspx

NPF registry project
 

There seems to be some confusion about the registry projects going on at various organizations and I'd like to clear this up. Muhammad Ali Parkinson Center's registry is designed to allow people with Parkinson's (PWP) to share their story and track their disease. It is designed as a resource for the community. It is not, however, designed to be a scientific resource. The PD-DOC project is designed around a very specific dataset used in clinical trials. The data is expensive to collect, requires a lot of neurologist time for each PWP, and requires the funding associated with a clinical trial to be implemented. This means that PWP who are excluded from clinical trials -- including later stage patients, PWP with early dementia, PWP with comorbid conditions -- are excluded from the PD-DOC dataset. Further, PD-DOC is not a longitudinal database, meaning that it does not follow a set of PWP for a long time. It collects data only on PWP who participate in clinical trials and only for the duration of the clinical trials. PD-DOC is really being built to identify biomarkers for PD -- things that indicate the presence or progression of PD that can be found through a blood test, medical imaging, or some other lab test. When such a biomarker is found, the current PD-DOC dataset will largely be scrapped in favor of one based on the biomarker, as funding agencies will no longer be willing to pay for the expensive collection of neurologist evaluations and will opt instead to measure progression via the (presumably more accurate) biomarker.

The NPF registry (yes, I am involved in it) is designed to address many of these concerns. Data is collected from every PWP seen by a participating neurologist (or an unbiased subset of them) and this includes early stage, late stage, and cognitively-impaired people. By collecting data annually from every PWP, we are targeting the quality of care. The NPF's registry focuses on PWP-completed forms with neurologist insight and some tests completed by a researcher. The data is validated (and thus can be used in research) but is easy and inexpensive to collect, and was designed to give insight into care quality.

The NPF registry is being guided by Professor Gerry O'Connor of the Dartmouth Health Policy Center. He was the architect of the Northern New England Cardiovascular Group Registry and the Cystic Fibrosis quality registry. Both these projects changed the course of care in their diseases. Atul Gwande wrote a powerful piece in the New Yorker about the Cystic Fibrosis quality project, The Bell Curve (available on the New Yorker website). If we can bring a fraction of the improvement in care quality achieved by the cardiovascular group or CFF, we will have changed Parkinson's care for the better. Other registries are not designed to directly address care issues: PD-DOC is largely populated with drug studies. In contrast, NPF's registry tracks referrals to allied professionals, evaluates care-giver strain, and measures quality of life, among other data.

Each of these databases, can, in its own way, provide a benefit. MAPC's project is designed around helping PWP deal with their disease. PD-DOC's project is about creating lasting value from short-term clinical trials. NPF's registry is designed to help neurologists and their patients to define and practice exemplary care. No two of these goals could be achieved through the same registry as each balances, in a different way, cost, intensity, and sustainability.

More registries
 

Another poster spoke about the recent registry legislation. National and state-wide registries are typically designed to study incidence of a disease, not outcomes. The Nebraska registry requires physicians and pharmacists to notify the Nebraska registry upon first diagnosis of a patient. Interestingly, there is no mechanism to update the registry if a patient is later found to not have Parkinson's, as a significant fraction seem to be. The national registry bill (H.R. 1362) specifies "a system to collect data on Parkinson’s disease including information with respect to the incidence and prevalence of the disease in the United States... the age, race or ethnicity, gender, military service if applicable, and family history of individuals who are diagnosed with the disease". While data on the incidence and prevalence of PD and demographic data will be interesting, this is not data that will lead to substantial scientific insight.

would like more info
 

pnschmidt -

Thank you for your reply and explanation. It sounds like a worthy goal and effort. I am wondering how or where we can find information about the registry - is it on the NPF site? Seems like this deserves more recognition and attention, but not many in the PD patient or organization community seem to be aware of it. Were patients included in the design process of the study/registry?

Thanks!

Participatory Medicine
 

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.

I'll make sure that we publish our preliminary results on our web site. A report is coming out in Parkinsonism and Related Disorders.

Going beyond the basics.
 

Thank you so much for taking the time to reply in the forum. As patients with an obviously vested interest, we get frustrated with what seems like steps in the right direction that often seem to gain very little momentum. I noticed that the PD-DOC database was pretty limited in scope but was encouraged to even see the words 'epidemiology' and 'Parkinson's' on the same page, so I assumed that it plays a role in data collection, but apparently not beyond the most basic demographics.

I was really struck by your last sentence. While I don't expect collecting basic demographic data on people who are being treated for Parkinson's will result directly in a smoking gun in the environment as a trigger for some cases of non-familial PD, I do think we are at least acknowledging that it's important enough to begin tracking data in the first place. I am most curious to see who might be able to address your last thought; if the basic data will not lead to scientific insight, what kind of data do we need to lead us in that direction?

Laura

progress
 

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.

Competition
 

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

definitions
 

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!

All data is valuable
 

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.

National Registry
 

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**

Registr vs Survey
 

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

PAN video
 

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