Frequently Asked Questions - mPower
About the Parkinson mPower app:
What is “mPower”?
Why the name “mPower”?
What makes mPower different from other health apps?
I have a smartphone, but it’s not an iPhone. Can i participate?
Were patients involved in the development of the app?
May I access the app without enrolling in the study?
Is the app available to patients outside the US?
Is Sage developing other app-based studies?
How is my privacy protected?
Who else will have access to my data?
I have a question that isn’t answered in this FAQ. Whom do I contact?
I’ve downloaded the app and have a question/problem:
If I grant access to one of the Permissions, such as location services, motion activity,
microphone, or notifications, can I change this later?
If I delete the app, am I removed from the study and what happens to my data?
How will the app affect my data plan?
Why doesn’t anything happen after I enter my email address on the Verification page?
I think I could have done better on one of the mPower activities. Is it okay to retake it?
How should I answer the question “What kind of health care provider currently cares for your
Parkinson’s disease” if I see more than one?
Will the Medication Tracker notify me to take my medication?
How frequently should I play the Spatial Memory game?
How do I start the Tapping Activity?
How frequently should I perform the Tapping Activity?
In the Voice Activity, I am not able to say “Aaaah” for 10 seconds. Should I stop and restart or
just go for as long as I can then stop?
How frequently should I do the Voice Activity?
What if I cannot walk 20 steps in a straight line to perform the Walking Activity?
How frequently should I do the Walking Activity?
Why is the Dashboard indicating I am less than 100% complete after I’ve completed all of the
activities?
If I perform an activity more than once per day, which score is shown on the Dashboard?
About the mPower study:
What is “mPower”?
Who is funding the mPower study?
Who designed the mPower study?
Who is running the mPower study?
What is Sage Bionetworks?
Who is eligible to participate in mPower?
I don’t have Parkinson’s disease. Can I participate in mPower?
Will I have access to my data?
Will I be able to compare my data with the data of other participants?
Who else will have access to my data?
How many people do you think will enroll in mPower?
May I remove my data from the study if I choose to at a later date?
How is my privacy protected?
May I limit my participation to only certain areas of the study?
Will I be able to drop out at anytime?
How long will the mPower study last?
I have a question that isn’t answered in this FAQ. Whom do I contact?
About Parkinson’s disease
Where can I find more information about Parkinson’s disease?
What is Parkinson’s disease?
Who gets Parkinson’s disease?
What causes Parkinson’s disease?
Where can I find more information about Parkinson’s disease?
Sage Bionetworks, The Michael J. Fox Foundation for Parkinson’s Research, and Apple
What is the relationship between Sage Bionetworks and the Michael J. Fox Foundation?
What is the relationship between Sage Bionetworks and Apple?
Emerging Technologies and Parkinson’s Drug Development
What technology or health care trends enable studies like mPower?
What other technologies is The Michael J. Fox Foundation developing for Parkinson’s disease
in this area?
ABOUT THE PARKINSON mPOWER APP
What is “mPower”?
mPower (ParkinsonmPower.org) is an iPhone app-based study designed to monitor and
understand the causes of variations in symptoms of Parkinson’s disease. Living with
Parkinson’s disease means coping with symptoms that change daily. Yet these daily changes
are not tracked frequently enough. The Parkinson mPower app will use questionnaires, sensor
data from your phone, and optional wearable device data to help you track your condition 24x7,
allowing you to review trends and share this information with researchers.
Why the name “mPower”?
We intend for the mPower project to live up to its name -- "mobile Parkinson observatory for
worldwide evidence-based research" -- "mobile observatory" to enable real-world observations
by and about individuals, and "worldwide evidence-based research" to collect and analyze
empirical data as frequently and as objectively as possible. And of course the ultimate intent is
to empower patients around the world as partners in scientific research.
What makes mPower different from other health apps?
Many health-related apps allow a user to record information related to their personal health, but
with no opportunity for this information to help advance scientific research in any kind of
controlled study. mPower is different because it is a research study designed to gather
information from enough participants to put individuals’ data into a broad context.
I have a smartphone, but it’s not an iPhone. Can I participate?
No. This first iteration of mPower is available only on the iPhone platform. iPhone users must be
running iOS 8 or higher on an iPhone 5 or higher. We hope that future versions of mPower will
be available on the Android platform.
Were patients involved in the development of the app?
Yes. Sage and its partners engaged the Parkinson’s community while designing and building
the mPower study. Participants have an opportunity to help us continue to improve the app. We
welcome all feedback! You can contact us here with your ideas about how to improve mPower
or any other questions you may have about the app or mPower study.
May I access the app without enrolling in the study?
No. To use the mPower app one must register for the mPower study and provide informed
consent for the research study.
Is the app available to patients outside the United States?
No. The mPower study is currently available only to U.S. residents over the age of 18. Sage is
working with appropriate research ethics bodies outside the United States to broaden the scope
of mPower to individuals in other countries.
Is Sage developing other app-based studies?
Yes. Sage has also announced the launch of “Share the Journey: Mind, Body, and Wellness
after Breast Cancer” (sharethejourneyapp.org), an app-based study of common consequences
of breast cancer treatment, including fatigue, cognitive difficulties, sleep disturbances, mood
changes, and reduction in exercise performance. Sage’s research platforms are also used to
support app-based studies in the areas of diabetes, cardiovascular health, and asthma.
How is my privacy protected?
We are committed to protecting your privacy. Except as required by law, you will not be
identified by your name or by any other direct personal identifier. Your contact information,
including your name and e-mail address, will be stored separately from the study data. We will
use a random code number instead of your name on all your study data. This code cannot be
used to directly identify you. Information about the code will be kept in a secure system. Your
coded study data (without your name) will be encrypted and stored on a secure cloud server to
prevent improper access. Sage or anyone else affiliated with mPower will never sell, rent, or
lease your contact information. The mPower app does NOT access your personal contacts,
other applications, text message content, or Web sites visited.
Who else will have access to my data?
This study is unique in that it gives you the choice of how to share your data. You can elect to
share your coded study data (without your name or directly identifying information) with the
study team and research partners only, or to share more broadly with other qualified
researchers registered with Synapse, Sage’s research platform. You can set your data sharing
options during the enrollment process within the app and/or anytime thereafter on the app
settings.
For regulatory purposes, your study data, account information and signed consent form may
also be reviewed by the US National Institutes of Health, Department of Health and Human
Services agencies, Office for Human Research Protection, and other agencies as required, in
addition to the Institutional Review Board who monitors the safety, effectiveness, and conduct of
the research being conducted and potentially others, if the law requires.
I have a question that isn’t answered in this FAQ. Whom do I contact?
If you have further questions that aren’t addressed here, you can visit the study web site at
http://parkinsonmpower.org or contact the mPower study by email at PDApp@sagebase.org or
call toll free 877-822-4708 or +1 206 667-2129.
I’VE DOWNLOADED THE APP AND HAVE A QUESTION/PROBLEM
If I grant access to one of the Permissions, such as location services, motion activity,
microphone, or notifications, can I change this later?
Yes, these can be changed under your Profile by going to Permissions.
If I delete the app, am I removed from the study and what happens to my data?
No. Deleting the app will prevent you from providing more data to the app, however your
previously provided data that may have already been distributed cannot be destroyed or
deleted. Likewise, if you withdraw from the study, we will stop collecting new data, but the coded
study data that you have already provided will not be able to be destroyed or deleted. To
withdraw from this study please contact Dr. Andrew Trister, the mPower medical monitor, by
email at PDApp@sagebase.org or call toll free 877-822-4708 or +1 206 667-2129 or click the
‘Leave Study’ link in the profile page of the application.
How will the app affect my data plan?
The study app is optimized to use a wifi connection to share your data with researchers.
Nevertheless, there may be instances where your mobile data plan will be used. We do not
anticipate the app using more than 100 MB of data per month.
Why doesn’t anything happen after I enter my email address on the Verification page?
You need to first tap on the link in the email we sent to you. If you don’t see an email with the
subject “Verify your account,” please check your spam folder. After you open the email and click
on the link, select “Tap to Continue” in the app.
I think I could have done better on one of the mPower activities. Is it okay to retake it?
You can make several attempts at an activity that you are doing before medication or after
medication or at any other time. This is your tool, and you know yourself best.
How should I answer the question “What kind of health care provider currently cares for
your Parkinson’s disease” if I see more than one?
When responding to this question, select the person who makes the primary decisions for your
Parkinson’s disease.
Will the Medication Tracker notify me to take my medication?
No. The medication tracker currently does not include a medication reminder.
How frequently should I play the Spatial Memory game?
This task is optional and available for you to track your memory as often as you would like.
How do I start the Tapping Activity?
The activity starts when you starting tapping on the circles. We will soon include the instruction
to “Tap to begin.”
How frequently should I perform the Tapping Activity?
We ask that you participate in this activity at a point right before you take your Parkinson’s
medication, then again when the medication has taken effect, and finally a third time during the
day. If you do not take Parkinson’s medications, you can participate any time during the day as
often as you would like.
In the Voice Activity, I am not able to say “Aaaah” for 10 seconds. Should I stop and
restart or just go for as long as I can then stop?
If you think that you can say “Aaaah” for 10 seconds, then restart the test. If not, then go for as
long as you can and then stop.
How frequently should I do the Voice Activity?
We ask that you participate in this activity at a point right before you take your Parkinson’s
medication, then again when the medication has taken effect, and finally a third time during the
day. If you do not take Parkinson’s medications, you can participate any time during the day as
often as you would like.
What if I cannot walk 20 steps in a straight line to perform the Walking Activity?
You can walk up to 20 steps, or for up to 30 seconds, as long as you can do so safely and
unassisted.
How frequently should I do the Walking Activity?
We ask that you participate in this activity at a point right before you take your Parkinson’s
medication, then again when the medication has taken effect, and finally a third time during the
day. If you do not take Parkinson’s medications, you can participate any time during the day as
often as you would like.
Why is the Dashboard indicating I am less than 100% complete after I’ve completed all of
the activities?
The Dashboard will only reflect 100% complete when each of the activities is performed the
requested number of times (3 for tapping, walking, and voice, for example).
If I perform an activity more than once per day, which score is shown on the Dashboard?
The activity scores on the Dashboard will reflect the range of your performance on a given day
in each activity.
I have a question that isn’t answered in this FAQ. Whom do I contact?
If you have further questions that aren’t addressed here, you can visit the study web site at
http://parkinsonmpower.org or contact the mPower study by email at PDApp@sagebase.org or
call toll free 877-822-4708 or +1 206 667-2129.
ABOUT THE mPOWER STUDY
What is “mPower”?
mPower is an iPhone app-based study designed to monitor and understand the causes of
variations in symptoms of Parkinson’s disease (ParkinsonmPower.org). Living with Parkinson’s
disease means coping with symptoms that change daily. Yet these daily changes are not
tracked frequently enough. The Parkinson mPower app will use questionnaires, sensor data
from your phone, and optional wearable device data to help you track your condition 24x7,
allowings you to review trends and share this information with researchers.
Who is funding the mPower study?
Funding for mPower was generously provided by the Robert Wood Johnson Foundation
(http://www.rwjf.org/).
Who designed the mPower study?
mPower was designed and developed by Sage Bionetworks, a Seattle-based nonprofit research
organization. Sage president Stephen Friend, MD, PhD, is the study’s principal investigator.
mPower was created in collaboration with Ray Dorsey, MD, at the University of Rochester, Bas
Bloem, MD, PhD, at the Radboud University Medical Center in Nijmegen, The Netherlands, and
Max Little, PhD, at Aston University in the United Kingdom. In addition, Sage was advised by
Karl Kieburtz, MD, MPH, at the University of Rochester and Caroline Tanner, MD, PhD, at the
University of California San Francisco. mPower was designed and developed by Sage
Bionetworks with collaborators Ray Dorsey, MD, at the University of Rochester and Max Little,
PhD, at Aston University in the United Kingdom. Sage was also advised by Karl Kieburtz, MD,
MPH, at the University of Rochester, Caroline Tanner, MD, PhD, at the University of California
San Francisco, and Bastiaan Bloem, MD, PhD, at Radboud University Nijmegen Medical Centre
in The Netherlands.
Who is running the mPower study?
mPower is run by Sage Bionetworks, a Seattle-based nonprofit research organization. Sage
president Stephen Friend, MD, PhD, is the study’s principal investigator. mPower was created
in collaboration with Ray Dorsey, MD, at the University of Rochester, Bas Bloem, MD, PhD, at
the Radboud University Medical Center in Nijmegen, The Netherlands, and Max Little, PhD, at
Aston University in the United Kingdom. In addition, Sage was advised by Karl Kieburtz, MD,
MPH, at the University of Rochester and Caroline Tanner, MD, PhD, at the University of
California San Francisco.
What is Sage Bionetworks?
Sage Bionetworks (www.sagebase.org) is a Seattle-based nonprofit research organization
formed to accelerate the flow of relevant scientific data so more scientific discoveries can be
made by more people. Sage builds software systems that help researchers capture and share
data in useful formats, and helps to coordinate teams of researchers to make scientific
discoveries. Sage creates and fosters cultures of data sharing and reuse.
Who is eligible to participate in mPower?
United States residents over the age of 18 are eligible to take part in the mPower research
study. Sage is working to broaden the scope of mPower to individuals in other countries, such
as the Netherlands, through ParkinsonNet-NHL.
I don’t have Parkinson’s disease. Can I participate in mPower?
Yes! Participation from volunteers who do not have Parkinson’s disease will enable researchers
to compile greatly needed, age-matched control data.
Will I have access to my data?
Yes! You will be able to see trends in your data within the study app, as well as request a
download of all your study data at the study web site in the near future (ParkinsonmPower.org)
Will I be able to compare my data with the data of other participants?
We will return the insights learned from analysis of the study data through the study’s web site
(ParkinsonmPower.org) as those insights are validated. You will be able to track your own data
and export it at will to share with your physician or anyone you choose.
Who else will have access to my data?
This study is unique in that it gives you the choice of how to share your data. You can elect to
share your coded study data (without your name or directly identifying information) with the
study team and research partners only, or to share more broadly with other qualified
researchers registered with Synapse, Sage’s research platform. You can set your data sharing
options during the enrollment process within the app and/or anytime thereafter on the app
settings.
For regulatory purposes, your study data, account information and signed consent form may
also be reviewed by the US National Institutes of Health, Department of Health and Human
Services agencies, Office for Human Research Protection, and other agencies as required, in
addition to the Institutional Review Board who monitors the safety, effectiveness, and conduct of
the research being conducted and potentially others, if the law requires.
How many people do you think will enroll in mPower?
We would love to enroll as many people as possible and expect thousands to take part in the
study.
May I remove my data from the study if I choose to at a later date?
You may decide to remove yourself from the mPower study at any time, but any data you have
contributed up until that point will remain in the study.
How is my privacy protected?
We are committed to protecting your privacy. Except as required by law, you will not be
identified by your name or by any other direct personal identifier. Your contact information,
including your name and e-mail address, will be stored separately from the study data. We will
use a random code number instead of your name on all your study data. This code cannot be
used to directly identify you. Information about the code will be kept in a secure system. Your
coded study data (without your name) will be encrypted and stored on a secure cloud server to
prevent improper access. Sage or anyone else affiliated with mPower will never sell, rent, or
lease your contact information. The mPower app does NOT access your personal contacts,
other applications, text message content, or Web sites visited.
May I access the app without enrolling in the study?
No. To use the mPower app one must register for the mPower study and provide informed
consent for the research study.
May I limit my participation to only certain areas of the study?
Yes. We will send notices on your phone asking you to complete activities and surveys. You
may choose to act at your convenience (either then or later), and you may choose to participate
in all or only in some parts of the study. You may skip any questions you do not wish to answer
or any activity you do not wish to complete.
Will I be able to drop out at anytime?
Yes. You may decide to remove yourself from the mPower study at any time, but any data you
have contributed up until that point will remain in the study.
How long will the mPower study last?
We anticipate this study will last about six months, however the app can remain on your phone
for multiple years, and you can keep using it to track your symptoms and review your data.
Sage and its partners plan to periodically update and improve the mPower study/app with
feedback from participants.
ABOUT PARKINSON’S DISEASE
What is Parkinson’s disease?
Parkinson’s disease is a chronic, degenerative neurological disorder that affects one in 100
people over age 60, making it the second most common degenerative brain disease after
Alzheimer’s and the 14th leading cause of death in the United States. No cure has yet been
found.
Parkinson’s disease was first characterized extensively by an English doctor, James Parkinson,
in 1817. Today, we understand Parkinson’s disease to be a disorder of the central nervous
system that results from the loss of cells in various parts of the brain, including a region called
the substantia nigra. The substantia nigra cells produce dopamine, a chemical messenger
responsible for transmitting signals within the brain that allow for coordination of movement.
Loss of dopamine causes neurons to fire without normal control, leaving patients less able to
direct or control their movement. Parkinson’s disease is one of several diseases categorized by
clinicians as movement disorders.
Who gets Parkinson’s disease?
While the average age at onset is 60, some people are diagnosed at 40 or younger. There is no
objective test, or biomarker, for Parkinson’s disease, so the rate of misdiagnosis can be
relatively high, especially when the diagnosis is made by a non-specialist. Estimates of the
number of people living with the disease therefore vary, but recent research indicates that at
least one million people in the United States, and more than five million worldwide, have
Parkinson’s disease.
What causes Parkinson’s disease?
The exact cause of Parkinson’s disease is unknown, although research points to a combination
of genetic and environmental factors. If a continuum existed, with exclusively genetic causes at
one end and exclusively environmental causes at the other, different Parkinson’s patients would
likely fall at many different places along that continuum.
Where can I find more information about Parkinson’s disease?
www.michaeljfox.org
www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
SAGE BIONETWORKS, THE MICHAEL J. FOX FOUNDATION, AND APPLE
What is the relationship between Sage Bionetworks and The Michael J. Fox Foundation?
Sage Bionetworks developed mPower with the goal of partnering patients with researchers to
better understand Parkinson’s disease. The Michael J. Fox Foundation for Parkinson’s
Research is a natural partner in this endeavor, as they are the world’s largest nonprofit funder of
Parkinson’s research and have a shared interest in empowering Parkinson’s patients. In
conjunction with the launch of ResearchKit, a new software framework announced by Apple on
March 9 that turns iPhone into a powerful tool for medical research, and mPower, the
Foundation announced the launch of Fox Insight, a Web-based virtual clinical study open to
individuals of any age, both with and without Parkinson’s disease, worldwide. Later this year, we
plan to analyze data from participants who enroll in both mPower and Fox Insight to validate the
power of these two approaches in accelerating Parkinson’s disease research.
What is the relationship between Sage Bionetworks and Apple?
Sage Bionetworks developed mPower with the help of many enthusiastic partners, including
health professionals, researchers, designers, and user experience experts. It is extremely
important for a research study to engage as many participants as possible, and Apple is a
natural partner for developing an engaging phone experience. The development of mPower
coincided with the development of Apple’s ResearchKit to set a benchmark for others to follow
for an open, engaging, and effective health app experience.
EMERGING TECHNOLOGIES AND PARKINSON’S DRUG DEVELOPMENT
What technology or health care trends enable studies like mPower?
The cost of data generation and data collection is rapidly falling. Individuals’ health can now be
tracked in detail using mobile devices equipped with sensors that continue to improve in their
accuracy. Healthy individuals and those affected by diseases are often willing to contribute to
research studies by gathering and transmitting these data. According to a recent report in The
Economist, currently about 2 billion people around the world have access to smartphone
technology, and 80% of adults will use an Internet-connected mobile device by 2020.
(http://www.economist.com/news/briefing/21645131-smartphone-defining-technology-age-trulypersonal-computer).
What other technologies is The Michael J. Fox Foundation developing for Parkinson’s
disease in this area?
In August 2014, the Foundation announced a collaboration with Intel Corporation to develop big
data analytics and wearable technologies to speed Parkinson’s drug development. This ongoing
effort is an important step in enabling researchers and physicians to measure progression of the
disease and to speed progress toward breakthroughs in drug development.
Later in 2015, Intel and MJFF plan to launch a mobile application that enables patients to report
their medication intake as well as how they are feeling in an effort to enable medical
researchers to study the effects of medication on motor symptoms via changes detected in
sensor data from wearable devices.