What's been happening at PDMeasure?

Since it was launched last October, PDMeasure has gradually been receiving data from a wide range of people.

NTageTap.png

Currently:
96 people have completed the basic data survey;
51 people have completed the medications survey;
340 completions of the side-to-side tap test have been recorded.

My thanks go to everyone who has donated data, and especially to those 5 or 6 people who have provided a long sequence of test data. (Everything is anonymous, so I can't thank them personally.)

Most of the data came as a result of PDMeasure featuring In a MJFF blog. My thanks go to them. They will be launching something similar later this year. The quality of their brand name is such that I expect them to get far more data.

In the meantime, PDMeasure requires more data. A pressing need is for people to repeat the side-to-side tap test. To join PDMeasure, or to donate more data or to access the data, go to:

http://www.parkinsonsmeasurement.org/PDMeasure/

NTminSinceMedsTap.png

A key requirement is for PDMeasure to have an online, objective symptom measurement test. We use the side-to-side tap test. This needs to be validated.

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We have insufficient data to provide statistical significance, but the data so far shows, as we would expect:

- older people have, on average, lower scores than younger people,

- people with more years from diagnosis have, on average, lower scores than the newly diagnosed,

- it will vary from person to person, and according to the drugs they take, but after a person goes beyond a time, of, say, 100 min after their last medication, its effect will wear off, leading to lower scores.

It appears that people are learning to get higher scores in the test. One person reported that they could improve their score by moving their body as well as their arms and hands as they go to and thro between the q and p keys.

Combined left and right hand averages for doing the test for the 1st through 5th time are 38.1, 40.7, 38.4, 39.2, 39.6.

Why does this matter?

The improvement due to the "learning effect" could be credited wrongly either to the efficacy of the therapy under test or to the placebo effect.

To avoid this, any use of such tools should work through the learning period before their use in trials.

Finally, you can do more than just donating data, though if that's all you want to do, I'm still very grateful. You can help analyse the data. The computer code is open. Use it as you want. The data is open: you can use either the raw data or, simpler, use the joined data at the end of:
http://www.parkinsonsmeasurement.org...Statistics.php
It's still under construction, but what is there is good.

The data is in csv form, and can be put directly into Excel or, if you have some programming experience, I recommend R. Mine it.

MORE DATA + MORE ANALYSIS => MORE PROGRESS

John

My thanks goes to the people who have provided data to PDMeasure.

Some stats:
109 people have completed the basic data survey;
58 people have completed the medications survey;
546 runs of the side-to-side tap test have been completed;

New registrations are rare. The numbers taking the side-to-side tap test appear healthy, but in fact the majority of test completions come from just two people.

New registrations are welcome. Returning participants are welcome. I would be particularly grateful if people would repeat the test frequently, so that for each person we could estimate progression.

Here's a couple of interesting graphs showing data from me.

timeSinceDrug.png

The first shows the side to side tap scores changes as the number of minutes since the last dose increases. As one would expect immediately after a dose scores are low, they rapidly build up as, in my case, the Stalevo takes effect; before declining, until they settle down at a constant level provided by endogenous dopamine, and the long acting rasagiline and Requip XL that I take.

timeSinceDX.png

The second graph shows the variation in my side-to-side tap test score over the course of a year, or so. The trend lines show that performance has improved over that time. As reported in a previous post, for people new to the test there is a definite learning effect, certainly over the course of the first 10 times that a person takes the test. But, having done the test so many times over the years, I think the learning effect is low for me. My hope is that the test, in itself, is mildly therapeutic. Far fetched? Possibly. But, by analogy, consider a fitness regime being measured by weekly timed 1000m runs.

MJFF plan to start a PwP data collection scheme later this year. I think it will be a great success. As I understand it, they have no immediate plans for running objective online tests, such as we use here. So, there will still be a need for PDMeasure.

To register on PDMeasure, to do the test or to browse the data go to:

http://www.parkinsonsmeasurement.org...sure/index.php

John

You WILL live to get a cell implant that WILL almost eliminate pd symptoms. It WILL be available before you are like many of us who are too "long in the tooth" with this disease. I had similar hopes 17 years ago, but it was not to be, but you, and all those who are at the beginning of this terrible journey, as YPWP, you guys and gals have REAL reason for hope, and soon I might add. How soon? I give it within the proverbial "5 more years" when a working safe cell implant strategy is initiated, on the market.

An update on PDMeasure. It's still chugging away:
135 registrations;
70 medication responses;
780 tap tests taken.

Latest results from my own data are:

timeSinceDrug.png

timeSinceDX.png

My side-to-side tap test results are gradually improving. I put this down to long-term learning. This raises an interesting question: can you beat Parkinson's, if only locally, by exercising based on making rapid, repetitive movements?

John

Reading this John I immediately thought of the recent post regarding boxing as a therapy which also involves rapid repetitive movements.

Nigel

using repetitive movements, I believe the answer is yes. I believe you can force the brain to adapt and create new pathways by repetition.

I believe this applies more for younger rather than older PWP and is the route of the different types of PD suffered by younger and older PWP.

I myself recently completed "Insanity". This is a very hard exercise program, lots of repetitive movements, I was improving every day.

Glad someone raised this point, I will speak to my Neuro soon and ask his opinion.

Neil.

I continue to take the tests reported above.

The graph below shows the tap test scores for the 89 tests done by me at least 10 hours after the last medication was taken. This time should be sufficient to eliminate most of the "noise" caused by the difference, from test to test, of the time since I last took my drugs.

timeSinceDXgt10h.png

The results described in this thread relies on measuring Parkinson's using a computer keyboard. Giancardo et al. [1] have taken the work further, making it more accurate. Their system "measures the key hold times (the time required to press and release a key) during the normal use of a computer without any change in hardware and converts it to a PD motor index ... This new approach discriminated early PD groups from controls with an AUC = 0.81 (n = 42/43; mean age = 59.0/60.1; women = 43%/60%;PD/controls). The performance was comparable or better than two other quantitative motor performance tests used clinically: alternating finger tapping (AUC = 0.75) and single key tapping (AUC = 0.61)."

Their "alternating finger tapping test" is very similar to the side-to-side (QP) tap test that can be run directly from my web site. There is a stand-alone version that does not store the results at:
Parkinson's Disease Measurement: PwP, surveys, trials, analysis
And a version that stores the results in a database, which you need to register with first, at:
Parkinson's Measurement > PDMeasure: home page

Reference

[1] Giancardo, L. et al. Computer keyboard interaction as an indicator of early Parkinson's disease. Sci. Rep. 6, 34468; doi: 10.1038/srep34468 (2016).
http://www.nature.com/articles/srep34468

John

Two years later and I'm still measuring my PD.

timeSinceDX.png

The generally improving trend of the period 7.5 to 12 years after diagnosis seems to have gone in reverse in the last 6 months.

In my view, the side by side tap test is a good way to measure short term changes, such as monitoring the immediate effects of a change of drug regimen.

However, regarding the use of the side by side tap test to measure long term changes in PD, I'm not so sure. My subjective view is that my PD has worsened more than these tests suggest. What seems to happen is that a new symptom develops (e.g. drooling), which gets worse for a while, before stabilizing, only to be followed by a yet another new symptom (e.g. dystonia).

You can run these tests or access the data online, just go to my website:

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

John