[Tupelo3]

The Michael J. Fox Foundation for Parkinson's Research (MJFF) and Intel Corporation announced today a collaboration aimed at improving research and treatment for Parkinson's disease -- a neurodegenerative brain disease second only to Alzheimer's in worldwide prevalence. The collaboration includes a multiphase research study using a new big data analytics platform that detects patterns in participant data collected from wearable technologies used to monitor symptoms. This effort is an important step in enabling researchers and physicians to measure progression of the disease and to speed progress toward breakthroughs in drug development.

Anonymous patient data is aggregated and analyzed for new insight into Parkinson's disease via a new partnership between Intel and the Michael J. Fox Foundation

The potential to collect and analyze data from thousands of individuals on measurable features of Parkinson's, such as slowness of movement, tremor and sleep quality, could enable researchers to assemble a better picture of the clinical progression of Parkinson's and track its relationship to molecular changes. Wearables can unobtrusively gather and transmit objective, experiential data in real time, 24 hours a day, seven days a week. With this approach, researchers could go from looking at a very small number of data points and burdensome pencil-and-paper patient diaries collected sporadically to analyzing hundreds of readings per second from thousands of patients and attaining a critical mass of data to detect patterns and make new discoveries.

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. Teams may also choose to contribute de-identified patient data for inclusion in broader, population-scale studies.

http://online.wsj.com/article/PR-CO-...13-910435.html

[gaykir]

http://newsroom.intel.com/community/...d-technologies

[johnt]

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

[Tupelo3]

Originally Posted by johnt

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.

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

All good points, John. I hope the message gets through!

[pegleg]

Luv what you said about us (patients) having to be part of the solution. But also like you, I am greatly glad to see effort being made in taking once subjective measurements and turning them into objective statistics. We have been playing the "placebo game" far too long.
Peggy