mPower Parkinson's Research Study

FREQUENTLY ASKED QUESTIONS

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.

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.

An iPhone 4S or a later version.

You can download the mPower Parkinson Research App on the App Store.

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

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.

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.

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.

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.

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

If you have further questions that aren’t addressed here, you can visit the study web site, or contact the mPower study by email at PDApp@sagebase.org, or call toll free 844-822-4708 or +1 206 667-2129.

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