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Old 09-18-2013, 11:15 AM
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
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Debi,

That's good to hear.

One of the key factors for anyone active in this area to consider is the platform used to collect the data. Going from more patient coverage to less but, conversely, from less measurement power to more, we have:

1. on-line tests, run directly off the internet, requiring no installation. This is the route I've gone down. It let's you do tap tests well, but tremor tests less well.

2. native apps running on a PC gives you more powerful tests because it gets you closer to the hardware. I chose not to do this because I expected that people would be reluctant to install programs written by an unknown person. I think this is less of a worry for an organization such as MJFF with good "brand" trust.

3. smart phones and tablets, these allow a wider range of tests because they come with onboard sensors such as accelerometers and GPS. They are also "wearable" so can collect data almost 24/7. Information such as distance and speed of walking can be collected.

4. bespoke hardware that measures a wider range of signs, such as rates of swallowing, blinking and drooling.

An important distinction between the methods is one of cost. Options 1 and 2 are effectively free for a large number of PwP, because they already own a PC or laptop. I suspect that smart phone ownership by PwP is large and is growing. Option 4 has a cost which it is likely will be have to be paid for by PwP themselves (unless someone is prepared to pay for it in a similar way to the generous payment by Sergey Brin for 23andMe genetic testing for PwP).

How much would people be prepared to pay for bespoke hardware?

Finally, it seems to me, that the really exciting step is the one that follows this: high frequency measurement of thousands of people, with integrated reporting, allows high frequency clinical trials, giving answers to important questions in weeks, not years.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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