Great news. It's the sort of thing that I've been banging on about for years.

But this worries me:

"MJFF and Intel share a commitment to increasing the rate of progress made possible by open access to data. The organizations aim to share data with the greater Parkinson's community of physicians and researchers as well as invite them to submit their own de-identified patient and subject data for analysis."

In as far as it goes, this is fine. But it doesn't go far enough. Who's missing here? Us.

Hopefully it's just a slip of the pen.

So, what does this Big Data world look like? It certainly includes the collection of the normal static biographical data, such as age at diagnosis, but goes on to store huge amounts of more recently available data, such as genetic information. Even this is the tip of the iceberg. There's a vast number of dynamic variables that can be measured - from blood pressure, to walking speed, from the time it takes our meds to take effect, to measures of our standing stability.

Big Data has some big objectives, like finding the cause of Parkinson's, but it has some small, but nevertheless valuable, objectives too, like finding ways to make my meds work better.

As it happens, I'm writing this post connected to an Arduino board (in effect, a simple sub credit card sized computer that costs about $10) data logging my skin electrical conductivity. Why? In the hope that it will give a proxy measure of the uptake of levodopa by my body. Then, once I can do this, I can search for ways that can make this as quick and as efficient as possible.

A final point. High tech is great. But, don't in any way take that as an excuse to think that there's nothing you can do to help. It's your illness - you need to be part of the solution.

John