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"

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