mPower:
Mobile Parkinson Disease Study

mPower:
Mobile Parkinson Disease Study

Frequently Asked Questions

About Parkinson Disease

More information about Parkinson disease can be found at:
www.michaeljfox.org
www.mayoclinic.org

 
What is “mPower”?

mPower is an iPhone app-based study designed to monitor and understand the causes of variations in symptoms of Parkinson disease (ParkinsonmPower.org). Living with Parkinson 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.

Who is eligible to participate in mPower?

Anyone over the age of 18 who lives in the US and has a personal iPhone is eligible to take part in the mPower research study in the US. Sage is working to broaden the scope of mPower to individuals in other countries.

I don’t have Parkinson disease. Can I participate in mPower?

Yes! Participation from volunteers who do not have Parkinson disease will enable researchers to compile greatly needed, age-matched control data.

Who is running the mPower study?

mPower is run by Sage Bionetworks, a nonprofit research organization located in Seattle, USA. 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.

Will I have access to my data?

Yes! You will be able to see trends in your data within the study app, and in the future you will be able to request a download of all your study data at the study website (ParkinsonmPower.org)

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 worldwide who 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 Department of Health and Human Services agencies, Office for Human Research Protection, and other agencies as required by law for verification of the research procedure and data, in addition to the Institutional Review Board who monitors the safety, effectiveness and conduct of the research being conducted.

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 re-identify you. Information about the code will be kept in a secure system. Only the study organizers and some IT staff will have the key to associate your coded study data to your name and account information. 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.

Will researchers contact me any other way, such as by email or phone?

You will mostly receive notifications through the app. Occasionally, researchers may also send email announcements to all participants.

What is Parkinson disease?

Parkinson 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 disease was first characterized extensively by an English doctor, James Parkinson, in 1817. Today, we understand Parkinson 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 disease is one of several diseases categorized by clinicians as movement disorders.

Who gets Parkinson 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 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 disease.

What causes Parkinson disease?

The exact cause of Parkinson 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 patients would likely fall at many different places along that continuum.

I have a question that isn’t answered in this FAQ. Who 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 844-822-4708 or +1 206 667-2129.

© 2015 Sage Bionetworks