[Conductor71]

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.

Originally Posted by lurkingforacure

Not too sure why it's in there, but hell, everything else is so why not, a new “Coordinated Environmental Public Health Network” to “build upon and coordinate among existing nvironmental and health data collection systems and create state environmental public health networks.”

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

[reverett123]

The short, cynical answer is that the ones with the money see little profit in it. Another is that PD is becoming more of a problem than it once was and institutions move slowly.

About manganese in particular- One of the core factors leading to PD is fetal exposure to a bacterial toxin called LPS which makes the immune system's microglia hypersensitive to future exposures. Manganese multiplies the effect. Even more interesting is the finding that the same toxin can trigger metal allergies! Goodness only knows what that does in the brain but PD is one choice.

Another possible source of exposure to manganese and even pesticides is the bathroom shower! Inhaled steam can carry contaminants into the system. That is a possible explanation of the observation that living in a home with well water seems to be a risk factor.

[girija]

Laura,
NIH is trying to put money or has done so for PD research, may not be at the same scale as AIDS. Following information is from NIH archives, budget for 2001-2005 which I thought was very comprehensive. Take look at the some of the people who contributed to this proposal. Now the sad part is it almost ten years, where are we now? How many items on this agenda are completed, if so, what did we get out of this? If I look into this deeply, I am sure I will find all the information I need, money was spent and research was done, papers are published.........yet nothing new showed up in the market for a patient. Why is it? Where is the road block? I think thats what we need to focus on.

I dont have any statistics on this statement I am making, so I may be wrong, but I will say it anyway. For most clinical studies, patient recruitment is a big problem. Of the 10 or so clinical studies I participated in (which are all non-invasive psychology and cognition type studies and sleep disorders) at the university, the researchers had a tough time recruiting patients. Could this be one of the reasons clinical studies donot succeed?

I donot have answers to these questions, just have suggestions to get some answers. But NIH is not exactly knocking on my door asking for my opinon either! Am I exhibiting a PD trait, apathy!!!!!!may be!

Girija


Dept OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Parkinson's Disease Research Agenda

Ruth L. Kirschstein, M.D.
Acting Director, NIH

March 2000

Contents:

* Congressional Report Language
* Executive summary
* Introduction

* Parkinson's disease research agenda
o Understanding Parkinson's disease
+ Using genetics to understand Parkinson's disease
+ Epidemiology to determine risk factors for Parkinson's disease
+ Life and death of neurons involved in Parkinson's disease
+ Neural circuits in Parkinson's disease
o Developing new treatments for Parkinson's disease
+ Pharmacological approaches
+ Deep brain stimulation and other surgical approaches
+ Cell implantation
+ Gene therapy
+ Rehabilitation
+ Outcomes research and evidence based medicine
o Creating new research capabilities
+ High throughput drug screening
+ Array technologies
+ Models of Parkinson's disease
+ Biomarkers
+ Neuroimaging
+ Brain banks and other repositories
o Enhancing the research process
+ Ethical issues
+ Innovative funding mechanisms
+ Public-private partnerships
* Conclusions
* Appendix
o Professional judgment estimates
o List of participants
o NIH Staff

CONGRESSIONAL REPORT LANGUAGE

This report has been prepared by the National Institutes of Health (NIH) of the Department of Health and Human Services in response to the following requests from Congress.

In its report on the

[indigogo]

here's the link to the NIH/NINDS Parkinson's Research Agenda page:

http://www.ninds.nih.gov/about_ninds...ons_agenda.htm

This topic is a good reason to get involved with PAN; they are (along with MJFF) quite involved with the people at NIH managing the agenda. Although headquartered in NINDS, PD research is spread out among about 10 different divisions at the NIH.

To collect epidemiological information is why the MS/PD registry being pushed by PAN in Congress is so important.

Patient recruitment for clinical trials has always been a problem in PD (age? apathy?); it is why the Parkinson's Disease Foundation has focused on this, and is trying to change the culture. http://www.pdf.org/en/clinical_trial_inv

More work also needs to be done on the environmental links to PD.

PD seems to have little presence at the CDC as well; don't have an answer for that one; PD all over the board needs more awareness and advocacy. We are playing catch up.

Hate to keep saying it, but - stay tuned! We hope to be advocating for things like this once we get ALPHA up and rolling next month; there will be lots of things for people to do.

[girija]

[Carey,
Thanks for adding NIH web page info. I got distracted while posting that message!
There are various reasons as to why scientific progress is so slow, I feel some of the bottle necks can be overcome with effort. You stated where patients can help, thanks and I am looking forward to hearing more about your Alpha project!

From R&D point of view, I think its time to have not-for-profit pharma, similar to OneWorld Health based in SAn Francisco. Take a look at their web page if you are interested. www.oneworldhealth.org.

girija

[olsen]

author of new book discussed on NPR yesterday: Chasing Medical Miracles: The Promise and Perils of Clinical Trials by Alex O'Meara
author is a former reporter for Newsday and Baltimore Sun who has Diabetes and participated in a clinical trial for "cure" . His research is extensive, including why a clinical trial is begun, who funds it, who benefits in terms of equipment, etc. Book is reviewed as being "hopeful"; author notes "at least I tried".

[LindaH]

Finally, there is currently a bill in Congress to start a national PD and MS Disease registry that will help to answer some of these questions. See PAN Action Alerts to ask your Represenatatives and Senators to cosponsor these bills.
House bill is HR 1362
http://capwiz.com/pan/issues/alert/?alertid=13800281

Senate bill is S1273
http://capwiz.com/pan/issues/alert/?alertid=13572346
Summary of bill
"The National MS and Parkinson's Disease Registries Act will establish separate, permanent, and coordinated MS and Parkinson's disease national registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC). As you know, we do not have accurate information on how many Americans are battling Parkinson's disease and MS and why. The registries will determine incidence and prevalence of the diseases and lay a foundation for better evaluating and understanding many factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and changes in disease burden and population over time. To develop the registries, the CDC will use a methodology that relies on de-identified information from existing databases"

[Jaye]

Participation: Dr. Laura Marsh, one of the pioneers of the "non-motor symptoms" movement in PD research, when asked what one could do to help research, answered sternly, "Tell them to volunteer to participate in trials and other studies. The single outstanding factor that slows research is lack of patient volunteers."

Environmental data: Last week my husband and I were at Johns Hopkins for our biannual participation in the longitudinal study of PD that I've been in since August 1999; he joined later that year a control for a man his age with PD. This was one of the studies that first showed different types of PD, such as stiffness-dominant or tremor-dominant, among other things. Yes, they own our brains, and we are rewarded with warm feelings of doing the right thing for all you PWPs. As we do every other year, we took batteries of cognition-testing puzzles and problems; we even had a several motor tests (the Movement Disorder Specialists still have their part to play). Among the questionnaires was a demographic rundown of where we have lived in our lives, how long each place, what age we were then, and so forth. I don't recall which other studies, but I have been asked these questions before.

Nutrition: A little bird in the hallway told me I might want to have my Vitamin D level checked. It seems that as more of our lives are spent indoors, few people get enough sunshine on their skin (about 15 min. a day, someone correct me if I'm too far off) to manufacture the Vitamin D we need. Among the many symptoms of a Vitamin D deficiency is poor potassium absorbtion. Aha! Up off the sofa!

Not-so-fast Department: A researcher has told me that [at least in legitimate studies being done for scientific reasons] failed trials are not the end of the road for the knowledge that can be gained from them. "We study them all very carefully, he said, sometimes for years."

Best for Last: Someone may have already reported this, but one of the research assistants at JH that day told me that ALL (rather than some, as they've been doing) of the data from all their PD studies is now being sent, in non-personally identifiable form, to PD-DOC and pooled for analysis. This effort is being coordinated by the University of Rochester, and there's a coalition of research institutions already doing it, with more to follow. Thus data from studies done at multiple centers will be pooled and reviewed as one big study, if I understand aright. I remember he said that the researchers would be looking at thousands of cases at a time, rather than dozens or hundreds. The website has been there at http://www.pd-doc.org/ since at least 2004, according to my notes. I was wondering when they'd hit the big-time. WTG, docs!!!

Jaye