Clinical trials using apps on smartphones - Cure Parkinson's

Cure Parkinson's

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Clinical trials using apps on smartphones

DianeJ profile image
13 Replies

An article today in Wall Street Journal gives info on participating in clinical trials using smartphones. Then man in the article has parkinsons and by downloading an app called mPower is able to participate in clinical research on parkinsons. I don't have a smart phone but there is info on Google about the app. Sounds like a painless way to aid research.

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DianeJ profile image
DianeJ
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jillannf6 profile image
jillannf6

SOUNDS GOOD TO HEAR

I HAVE PSP AND HSOUDL LIKE TO TAKE PART IN ANHY RESERCH WHICH IS ONGOIGN AND I HAVE AN IPHONE

LOL JIL

:-)

FMundo profile image
FMundo in reply to jillannf6

If you Google this, here is what you'll find out

About this Study:

Their Promotion . . .

Become a research partner! How can we better manage the symptoms of Parkinson’s disease (PD) together? Sage Bionetworks (nonprofit) is proposing a new approach to monitor health in PD using a mobile app. We want to understand why some people with PD have different symptoms than other people with PD, and why a person’s symptoms and side effects can vary over time. The insights gained from this study may help develop ideas about how to manage these differences in symptoms.

How this Study Works

The mPower is a unique iPhone application that uses a mix of surveys and tasks that activate phone sensors to collect and track health and symptoms of PD progression - like dexterity, balance or gait. Our goals are to learn about the variations of PD, to improve the way we describe these variations and to learn how mobile devices and sensors can help us to measure PD and its progression to ultimately improve the quality of life for people with PD. This study is unique in that it allows participants to step up as equal partners in the reseWho is Eligible to Participate

Who can join study . . .

If you are over 18 years old with Parkinson disease or not we invite you to join the study. You do not need to have Parkinson disease to join this study. You must be a U.S. resident and have a personal iPhone to participate.arch process.

Who's behind this

This study is sponsored by Sage Bionetworks, a 501(c)(3) nonprofit research organization, with funding from the Robert Wood Johnson Foundation.

SPONSOR:Sage Bionetworks

INVESTIGATOR:Stephen H. Friend, MD, PhD

1100 Fairview Ave. North

Seattle, Washington 98109-4433

United States

UNFORTUNATELY I HAVE A SMARTPHONE. (HOWEVER MY WIFE HAS AN IPHONE!). AS A FORMER SOFTWARE DEVELOPER, I THINK THAT THE FUTURE OF RESEARCH WITH PARKINSONS WILL RELY HEAVILY WITH DATA GATHERING OF SYMPTOMS USING MOBILE COMPUTING TECHNOLOGY. I'LL BE DOWNLOADING THIS APP TODAY.

FRANK MUNDO, PHOENIX, ARIZONA

FMundo profile image
FMundo in reply to FMundo

To get additional information, go to parkinsonmpower.org

Roseyuk profile image
Roseyuk

Hi. Does this app only available on I phones, I have I pad, and Samsung smart phone

Thanks ..

DianeJ profile image
DianeJ in reply to Roseyuk

According to the article "For now, the apps work only on the iPhone 5, 5s, 6 and 6 plus". I would go to google for additional info.

Roseyuk profile image
Roseyuk in reply to DianeJ

Thank you Diane..

Did also read it only applies to US residents only

Which I a disspointment ..

Would have liked for husband to have participated ..

NanCyclist profile image
NanCyclist

MJFF is making a similar app for android phones. I have using mPower for several months. Very easy

lark13 profile image
lark13

I asked my neurologist about it and he said it's a good thing to do.

rons profile image
rons

Sounds very similar to a research and practical proposal I have been touting round for a year now to help PWPs using smartphones and watches/wearables. This would focus initially on getting LD levels correct and taking meds on time (a matter dear to my heart esp. sitting here trying to type in a slightly off state because I was late last dose). so this is important as long as it isn't closed to people who like apple (i don't).

i cant get much help in my proposal, puk say they only fund academics, academics don't like working with non-academics, consultants say it's just obsessive....

honeycombe3 profile image
honeycombe3 in reply to rons

Ron,

I remember reading something along those lines around the right timescale & wondering whether or not you got anywhere with it. I wonder whether or not you follow any of the Cure Parkinson's information as they are very tuned in to this approach. If you haven't tried them yet you might visit their site & see if there is anything of interest.

I am contacting you privately via this site re headaches & Apomorphine as I saw you experienced this.

johntPM profile image
johntPM

As I see it, my PD, and indeed my health in general, is too important to leave entirely to the "experts".

Advances in technology make it easy, and cheap, to collect and distribute PD data.

Many PwP have the technical background to build these tools themselves. (And for those who don't, the slowly progressive nature of PD, gives you plenty of time to learn.)

I've built a tap test tool that accurately measures your rate of tapping on a laptop, and which stores your results in a database.

parkinsonsmeasurement.org

It's fascinating to see how your tap rate changes through the period of a dose.

I'm currently looking at Arduino, basically a tiny computer for £4, based applications such as tremor and movement measurement.

If anyone would like to collaborate, please get in touch.

John

rons profile image
rons in reply to johntPM

Would love to. Got some ideas will email. ron@strong.org.uk

mdoyle profile image
mdoyle

Documentary film project on medicine and technology seeks Parkinson’s patients who have downloaded and are actively using the mPower app.

If you are interested in sharing your experience for this piece, we would love to hear from you ASAP and ideally no later than 1/27/16. Please email us at mcbridecastingsubmissions@gmail.com with your answers to the short list of questions below regarding your story.

QUESTIONS:

* What motivated you to download and use mPower?

* What has been your experience using mPower been like thus far?

* Has using mPower led to specific insight or a change in your life or condition?

Thank you for your time and we look forward to hearing from you!

McBride Casting

Santa Monica, CA

mcbridecasting.com

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