Thanks for this Debi!

As someone 8 years after diagnosis, time is important. So I hope that this excellent MJFF initiative goes live as quickly as possible.

Every member of this forum could, in my opinion, help expedite the work of MJFF, and others working in this area, by:

1. Suggesting objective measurements that most closely match their overall experience of PD. Ideally these should not require a conscious intervention by the PwP, e.g. stoop or walking speed.

2. Enter data on PDMeasure:

http://www.parkinsonsmeasurement.org/PDMeasure

This is a web site that I run which allows people to enter data, such as month of diagnosis, and to take an online test, which is similar to one in the CAPSIT-PD set of tests.

There are currently 102 people enrolled.

If you haven't already enrolled, please register now. It takes just minutes to enter data and take a side-to-side tap test. The data is stored anonymously, but is open to anyone to analyse.

If you've already enrolled, please take the tap test frequently. Long sequences of measurements spanning months, or even better years, are especially valuable, because they help us to validate or, on the contrary, to invalidate the test.

I'll pass any knowledge that we gain to MJFF: it might just help them in a small way.

A final point, high frequency measurement enables a more personalized form of medicine. It may be, for instance, that a trial of a new therapy does not show any statistically significant change, for better or for worse, across the whole cohort. But, who would argue with a person continuing, well monitored, of course, with the treatment who across 500 daily measurements before the trial had shown a steady decline, but in the 200 days, say, of the trial had shown a steady improvement?

John