This partial quote by Lurkingforacure in our health care reform thread made me wonder just why the CDC does not collect and track data on neurological disease especially given the environmental component? Not sure if it's been discussed here before, but I thought it might merit a new thread.

Actually, this seems to me an outstanding idea, especially given that PD and many other diseases have environmental causation. Why wouldn't we want collective data to share within a national database? As we know that PD may be caused by toxins in our environment, I would certainly like to see data on this.

Research suggests that pesticides or even manganese may play a role in why we get PD- we all know that pesticide use is fairly widespread, but I don't think we know much about manganese (other than with consistent exposure in animal models it brings on Parkinsonism) in our environment. Manganese has long replaced lead in gasoline as an anti-knock additive; the EPA reports that it knows very little about the long term health effects, basically, expecting the manufacturer to "fill in data gaps" and "provide information that would result in a more definitive risk evaluation". In fact, their opening statement on the use of Manganese in gasoline is telling:

*Manganese is a neurotoxin and can cause irreversible neurological disease at high levels of inhalation (this would be PD). However, ingested manganese is a required element of the diet at very low levels. There is a concern that the use of manganese additives in gasoline could increase inhalation manganese exposures.

*After completing a 1994 risk evaluation on the use of MMT in gasoline, EPA was unable, based on the available data, to determine if there is a risk to the public health from exposure to emissions of MMT gasoline.

EPA Comments on the Gasoline Additive MMT

Global Lead Network: MMT Fact Sheet

So fifteen years later, we continue to suck Manganese into our lungs and further compromise our already dysfunctional brains. Canada and the US allow the use of MMT based on exposure levels instead of on long term, epidemiological studies of health effects due to exposure over time. Does this cause PD? Who knows? Sadly, without collecting, tracking, and sharing data, we may never know.

This research actually has the nerve to directly question the use of manganese in gasoline as a potential causation in those of us who are already predisposed. Shouldn't someone somewhere be conducting epidemiological studies?

Manganese Exposure May Speed the Emergence of Parkinson's Disease Symptoms

President Obama wants to fund this type of data collection- I say it's about time!

For decades, the United States has faced a fundamental gap in knowing how environmental contaminants affect people's health. CDC's new Environmental Public Health Tracking Network is working to close this gap by improving environmental public health surveillance. The Tracking Network is a dynamic Web-based tool that tracks and reports environmental hazards and the health problems that may be related to them. It allows scientists, health professionals, and members of the public to see where these hazards and health problems are occurring and how they are changing over time.

New Public Health Tool Helps Connect Environment and Health

Does anyone else know why we do not collect, track, and share selective disease data globally (national security issues aside)? Is PD considered an orphan disease, compared to AIDS or cancer, in this sense?
It seems to me that the epidemiology is grossly neglected. Wouldn't sharing research, patient experiences and backgrounds, tracking disease by geographic distribution, etc. all go a long way toward offering us an etiology?

We focus largely on pharma and the biochemical cellular research level, and this is probably where our greatest hope for a cure lies. Gratefully, we have MJFF actively working there for all of us. However, in focusing on the tiniest bits of the brain, are we somewhat missing the forest for the trees by overlooking broad, large scale data collection as a key link in possibly nudging us even closer to identifying an environmental aspect of PD and other diseases?

Laura