PDA

View Full Version : prevalence of Parkinson's




olsen
09-07-2006, 12:48 PM
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




indigogo
09-07-2006, 12:57 PM
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.

The Godfather
09-07-2006, 12:58 PM
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.

indigogo
09-07-2006, 01:22 PM
California registry
http://www.michaeljfox.org/news/article.php?id=192&sec=1

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

Todd
09-07-2006, 02:20 PM
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.

indigogo
09-07-2006, 03:04 PM
the one at the Ali center is different - it is randomly self-reported rather than information systematically provided by doctors as required by law.

Curious
09-07-2006, 04:46 PM
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?

indigogo
09-07-2006, 05:26 PM
Curious -

Not sure what kind of statistics there are, but the Department of Defense is a big spender for Parkinson's research. The Neurotoxin Exposure Treatment Research Program (NETRP) is funded in the U.S. Army Military Operational Medicine Research Program under the U.S. Army Medical Research and Materiel Command.

This is language from a letter requesting support from Congress for the program:

"NETRP research improves military readiness. American troops are routinely exposed to a wide range of chemicals and neurotoxins that may increase the risk of developing neurodegenerative conditions, particularly Parkinson's disease. Understanding how exposures occur, the incidence of disease afterwards, and how these conditions may be effectively treated, cured, or prevented allow the Department of Defense (DoD) to better protect military personnel, minimize the risk of future exposures, and improve the readiness of American military forces.

In addition to helping military personnel, NETRP research breakthroughs also benefit the more than one million Americans with Parkinson's disease, including 42,000 veterans and 60,000 newly diagnosed Americans each year."

Curious
09-07-2006, 05:35 PM
thank you indidgogo!!

not to get political here....but are they spending so much for a reason?

i do ask this because not only my dad was in the military, but a dear friend of mine was dx'ed in his early 40's. he was in vietnam and was mixed up in the agent orange stuff. :(

if this is a touchy subject, let me know and i will edit my post.

hugs and choccy...the good dark stuff that is good for your brain....to all. :D

indigogo
09-07-2006, 10:20 PM
thank you indidgogo!!

not to get political here....but are they spending so much for a reason?

i do ask this because not only my dad was in the military, but a dear friend of mine was dx'ed in his early 40's. he was in vietnam and was mixed up in the agent orange stuff. :(

if this is a touchy subject, let me know and i will edit my post.

hugs and choccy...the good dark stuff that is good for your brain....to all. :D

They spend it because it is needed and research is expensive! And ..... this is not a touchy subject :)

I know more than one Viet Nam-era jet pilot with PD.

Keep sending the choccy ..... hugs too!

Paul Wicks
09-08-2006, 11:00 AM
This section was written by an actual epidemiologist. Imagine, something in PD not written by our lord Keith Bridgeman!

http://en.wikipedia.org/wiki/Parkinson%27s_disease#Descriptive_epidemiology

The Godfather
09-08-2006, 11:22 AM
Completely wrong again Wicksy. The first half of that Wikipedia article was written by me. Your ACTUAL epidemiologist wrote none of it.

The accurate parts of the second half were also written by me. I added the male dominance generally. Your actual epidemiologist knew nothing about the female dominance in Japan which I also added. Unknown to you, he wrote to me directly concerning it asking why I thought there was a female dominance in Japan.

The rest of the latter half, written by your actual epidemiologist is largely wrong, and as can be seen by the frequent [citation needed] signs is mostly unsubstantiated. The racial figures turned out to be contradicted by published research. The 2% of the population figure was not supported by any research at all. The incidence figures given are ridiculousy in error. They would mean that more people developed PD every year than there are people with PD !

You obviously care more about who has written something rather that what is written. What do you think now, knowing that what you have added was actually mostly written by me, and that the small portion of it that was written by your actual epidemiologist is entirely false, misleading or unsubstantiated. ?

GregW1
09-08-2006, 03:46 PM
Well, then again, never mind. Just passing through to order meds for a disease I have. Later.

Thelma
09-08-2006, 04:37 PM
Ah shoot missed him again ....bbbbbbbbbbbbyyeeeeeeeeeeeee

Greeeeeeegorrrrrrrrrrrrrrrrrryyyyyyyyyyyyyyyyy

olsen
10-03-2006, 10:41 AM
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 Godfather
10-03-2006, 02:50 PM
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.

olsen
10-05-2006, 11:39 AM
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

*************

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

RLSmi
10-05-2006, 03:37 PM
Hi, guys and girls. I found my way back here with Rosebud's and Steve M's help. Thanks!

On the subject of this thread; one reason for the absence of official registries may be that the only diagnosis for PD that [U]everyone[U] accepts is completed only at post-mortem. The pre-mortem typical signs and symptoms, along with the pathologic demonstration of Lewy bodies in the mesencephalon (midbrain) constitute the unequivocal diagnosis of true PD. As many of you know, it is still difficult to distinguish among the several movement disorders subsumed under description "parkinsonism."

(By the way, I had forgotten what a fun pain in the ___ Keith can be! Welcome to the US, Bridgeman. Are you really in NY? :eek: )
Robert

The Godfather
10-05-2006, 04:00 PM
By the way, I had forgotten what a fun pain in the ___ Keith can be!
That's the nicest thing anyone's said to me. :p

No Robert, I'm not actually in New York. I'm presently posting from a high security prison in Guadeloupe where I'm serving a life sentence for cannibalism. I insisted at my trial that I thought it was Kentucky Fried Chicken, but to no avail.

http://smileys.smileycentral.com/cat/10/10_1_112.gif

rosebud
10-05-2006, 11:27 PM
I'm in Canada, and I think they use pharmacy records....how many people are on PD medications. Wouldn't that be a good indicator in the US as well?

Robert: Great to hear from you!

Keith: Did you lose your mother to PD? ... no obligation to answer, but if so I'm truly sorry.

K Hamilton
10-06-2006, 02:56 AM
One thing that complicates life is a lack of agreement as to when one can say that they "developed" Parkinson's. Because they are looking for answers to different questions, some registries/studies use the time of diagnosis as the starting point, others use the time at which problems/symptoms first presented themselves, still others use the time at which it started to affect the quality of life.

K Hamilton
10-06-2006, 03:07 AM
Keith:
Completely wrong again Wicksy. The first half of that Wikipedia article was written by me. Your ACTUAL epidemiologist wrote none of it.


Couldn't fool me, though - I picked out your inimitable writing style immediately. I couldn't tell you just which parts the epidemiologist wrote, though.

I noticed that somebody using the name "*******" aka "General Tojo" got themselves banned for life on Wikipedia. I'll assume you were a victim of identity theft.

The Godfather
10-06-2006, 07:23 AM
Keith:
Couldn't fool me, though - I picked out your inimitable writing style immediately. I couldn't tell you just which parts the epidemiologist wrote, though. The bad bits !:D

I noticed that somebody using the name "*******" aka "General Tojo" got themselves banned for life on Wikipedia. I'll assume you were a victim of identity theft.

Dozens of people were impersonating me on Wikipedia. Dozens more didn't impersonate me but were still assumed to be me.

The Godfather
10-06-2006, 07:36 AM
The prevalence of Parkinson's Disease can not be 1 to 1.2 million in the USA as is widely claimed. The highest known prevalence in the USA (and the world) is in Nebraska. If the same prevalence in Nebraska existed all over the USA it would still be less than 1 million. Given that the prevalence in other US states is much lower, the true figure may be less than 700,000.

However, what is Parkinson's Disease ? I keep on reading on BrainTalk of people being diagnosed at a certain time, but they then add that they must have Parkinson's Disease for years before that. There are a huge number of people that have Parkinson's Disease but that never get diagnosed, or that just don't get it badly enough.

There are about 6 million people known to have Parkinson's Disease, and many tens of millions who will be diagnosed at some time in their life. There may be hundreds of millions who get the symptoms at some time. Parkinson's Disease symptoms are probably far far more common than is assumed. Billions of people in the world don't get it, but that's solely because they don't live long enough or because they get something else instead.

toyL
10-06-2006, 09:01 PM
...or because they get something else instead. [/B]
I once tried to order a bowl of corn-flakes in the city of Nagpur. I got something else instead.