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!!!!!!)

'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

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!

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

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.

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.

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!

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.

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