I think that most researchers feel that they already have pretty good data on the regional and demographic issues around the incidence of Parkinson's. Just knowing zip code and occupation won't add a lot to the picture. What it could add is more detailed knowledge of the frequency, which will be used by NIH in determining budget priorities. Richard Smeyne gave a talk recently where he said cited conjecture that if we all lived to 110 years old, we'd all get PD. His hypothesis is that it typically takes two other factors to bring the age of onset down into the range we typically associate with PD. For example, a genetic propensity and pesticides together might trigger young onset. It is important to be able to connect incidence data with other variables, and typically we make those connections by collecting all the data together. An incidence/prevalence registry requires other data -- medical, environmental, etc. -- to give this insight.

I am very focused on care, and so I like to see therapies and outcomes collected together. In fact, we've seen that by simply asking neurologists, "did you refer a patient to a physical therapist?" rates of referrals go up.

I wouldn't want to denigrate any collection of information, though. The Nebraska registry is simple, but it is quite feasible and sustainable and should generate valuable information. For example, Smeyne also presented at the World Federation of Neurology data suggesting that exercise protected animal's brains from neurotoxins. I'd be interested to see long-term data on incidence if coupled with, say, data on community initiatives to promote physical education. Perhaps there are communities in Nebraska where physical education is a priority in the schools. Perhaps there are communities that host annual distance running events. It would be interesting to see the incidence of PD in those communities contrasted with other communities that are similar. Any data collection effort offers opportunities for discovery that wouldn't exist without that data.