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-   -   Plan: monitor 100,000 volunteers 24/7 for 30 years (https://www.neurotalk.org/parkinson-s-disease/201066-plan-monitor-100-000-volunteers-24-7-30-a.html)

Bob Dawson 02-15-2014 09:31 AM

Plan: monitor 100,000 volunteers 24/7 for 30 years
 
Digital Journal:
By Kerry Sheridan (AFP) Feb 14, 2014

One hundred people are about to donate their live bodies to science as part of an unprecedented new study that will examine how to improve personal health.

The Hundred Person Wellness Project will require round-the-clock monitoring of its subjects, who are presumed healthy at the time of enrollment.

Scientists will start by sequencing the entire genome of each participant. Then, for the next 25 years, they will take regular measurements of sleep patterns, heart rate, gut bacteria, proteins that track organ health, blood samples, immune cell activity and more.

"What is unique about humans is their individuality," said Leroy Hood at the American Association for the Advancement of Science annual meeting.
The idea is to "actually follow the transition of the heart, brain and liver from wellness to disease," said Hood, president of the Institute for Systems Biology (ISB) in Seattle, Washington.

The focus of the nine-month pilot program -- which aims to expand to 100,000 people and continue monitoring for up to three decades -- is on ways to improve individual wellness based on each person's unique makeup.

Hood said scientists will be on the hunt for "actionable opportunities for each individual," such as how they could change their nutrition to improve their health or avoid certain drugs that might be dangerous given their genetic makeup.

Hood's institute has budgeted about $10,000 per participant and is paying for the research through private donations, according to a report in Nature magazine this week that described the project as "unusually thorough."

It has also defied many of the conventions of clinical trials by doing away with any control group against which to compare results, and by planning to intervene on a personal basis with subjects as the study is ongoing.
The data will be anonymized and made available to qualified investigators so that they can determine for the first time what the metrics for wellness actually are.

Another key activity will be mining for wellness-to-disease transitions and looking for very early changes that could signal approaching illness.

In an era where personal monitoring of health via smart pedometers is already booming, Hood predicted that the data his project uncovers will be a boon to commercial investors.

"It is going to be a Silicon Valley-like opportunity," he said.

http://digitaljournal.com/life/healt...article/370839

johnt 02-15-2014 11:53 AM

My mantra is: more data, more analysis, more progress.

We, PwP, have the skills, we have the computing power, we can, I believe, do useful science.

So thanks for finding this Bob. It has similar objectives to what I'm trying to do with:

www.parkinsonsmeasurement.org

PDMeasure is part of this site and contains surveys and an on-line test which measures your side-to-side tapping speed. This feeds directly into a database. The data is anonymous, but open to anyone to use.

As I underand it MJFF plan to have an on-line survey system operational this year.

I'm currently looking at the 24/7 high frequency (every second) measurement of tremor, bradykinesia, stoop and blinking. My approach is to use an Arduino board, basically a small computer the size of a credit card. It is cheap (£7). It collects data from sensors around the body (£20), storing the raw data on a micro-SD card (£10). My background is in mathematics and computing, not electronics, so progress is slow.

I had one of those do I laugh or do I cry times yesterday. I was trying to solder together a piece of equipment to measure tremor. This required making 15 connections one tenth of an inch (2.56mm) apart. The irony of course is that this is not easy to do with a tremor. It took me a whole day to get right. It should have taken about 5 minutes.

If anyone is interested in this area, please get in touch.

John

Nan Cyclist 02-15-2014 03:47 PM

If Lee Hood is running it, it's the best! Jump, leap, gallop to get on board if you can.

HarryM 02-15-2014 07:22 PM

I don't want to use my health or disease as a hobby !


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