How is the prevalence of Parkinson's determined? there exists no registry. the CDC does not compile data on PD, as far as I can access--does anyone know how the prevalence is determined, or how I would find the information? thanks in advance, madelyn

Good question, Madelyn!

There is no national registry. I believe California has, or is in the process of establishing one - California is important because of its size and diversity.

I know that Nebraska has also established one.

A CDC registry is an important missing link. I don't know how prevalence is currently determined (accurately or inaccurately) without one.

This is a summary of the prevalence of Parkinson's Disease based on the entire scientific literature concerning it :



It details where it is most common, least common, the youngest, the oldest, gender differences, occupational differences, how common it is indifferent countries.

The various methods used to determine prevalence differ greatly from country to country.

California registry
http://www.michaeljfox.org/news/arti...p?id=192&sec=1

Nebraska registry
http://www.michaeljfox.org/news/arti...p?id=188&sec=1

California has a registry but it's a work in progress. For example, my neurologists claimed to know nothing about it. But I know other PD patients who have been a part of it.

I also believe the Ali center in Arizona has been working on one for quite some time as well.

the one at the Ali center is different - it is randomly self-reported rather than information systematically provided by doctors as required by law.

very interesting.

has there been studies on our (or all countries) millitary who have gotten parkinsons? not just occupation, but where they served, in combat....that type of thing?

Hello everyone again, thanks for the info--still wondering how the statistics are compiled on prevalence of PD in the US--is it thru #'s of prescriptions for PD drugs? would not seem accurate, esp now with one of the dopamine agonists being used for restless leg syndrome. the Ali foundation in Arizona (i think) has begun a registry, though it is relatively new. I would think since the passage of the HIPPA laws that physicians are banned from reporting patients with PD if they are not required to do so. Just thinking while typing--I am guillty of doing that too often...continue to be curious about the statistics and how they are determined. madelyn

The methods used to estimate the number of people with PD are very varied around the world and even within the U.S.A.. Here are the methods of some of the more prominent research concerning prevalence in the U.S. :

1. Movement Disorders [2004] 19 (3) : 318-323 (Strickland D, Bertoni JM.)

They used a PDregistry in Nebraska All physicians were required to report PD diagnosis, pharmacists reported new prescriptions of anti-PD drugs (PD cases were confirmed later with the prescribing physician), and there was a patient self-report mechanism. The overlap of reporting by the sources allowed estimation of the number not reported by any source, using the statistical technique "capture-recapture."


2. Neurology [1985] 35 (6) : 841-845 (R.S.Schoenberg, D.W.Anderson, A.F.Haerer)

A need for prevalence information emphasizing racial differences prompted a door-to-door survey of all residents of Copiah County, Mississippi. The fieldwork involved a complete census and an extensive screening questionnaire inquiring about diagnoses, signs, and symptoms of neurologic disease. Residents who lived in institutions or had screening responses suggestive of epilepsy were requested to have an examination by neurologists who used defined diagnostic criteria.


3. American Journal of Epidemiology [2003] 157 (11) : 1015-1022 (S.K.Van Den Eeden, C.M.Tanner, A.L.Bernstein, R.D.Fross, A.Leimpeter, D.A.Bloch, L.M.Nelson)

Newly diagnosed Parkinson's disease cases in 1994-1995 were identified among members of the Kaiser Permanente Medical Care Program of Northern California, a large health maintenance organization. Each case met modified standardized criteria/Hughes diagnostic criteria as applied by a movement disorder specialist.


4. American Journal of Epidemiology [1995] 142 (8) : 820-827 (R.Mayeux, K.Marder, L.J.Cote, J.Denaro, N.Hemenegildo, H.Mejida, M.X.Tang, R.Lantigua, D.Wilder, B.Gurland, et al)

The authors estimated the prevalence and incidence of Parkinson's disease in a culturally diverse community in New York City over a 4-year period (January 1, 1988-December 31, 1991) using a disease registry substantiated, for older individuals, by a subsequent survey of a random sample of Medicare recipients between January 1, 1992, and December 31, 1993.

How is the prevalence of Parkinson's determined in the United States?
There is no National registry; the Ali foundation has a self reported
registry and a couple of states do have registeries, though nothing on a
national level. How is the prevalence determined? thank you, madelyn

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It is extrapolated from a sample size, just like a survey of 1,200 most likley voters can predict the results of a presidential election with a 5% margin of error.

Yours, Hubert H. Fernandez