mPower:
Mobile Parkinson Disease Study

mPower:
Mobile Parkinson Disease Study

BECOME A
RESEARCH
PARTNER.

You can help make a difference.

August 2016

May 2016: Change of Principal Investigator Announced

You gave your consent to participate in the mPower research study directed by Dr. Stephen Friend. Effective on June 1st, 2016, Dr. Lara Mangravite, PhD. will lead this project. Dr. Mangravite is a research scientist at Sage Bionetworks and wants to better understand neurodegenerative diseases. Dr. Friend will continue being involved in the project as a scientific advisor and as chairman of Sage Bionetworks’ board of Directors.

The relevant section of the study consent form will now indicate Dr. Mangravite as the study investigator. The phone numbers and e-mail address originally provided in your consent form have not changed.

March 2016: Version 1.3 Release

We are updating the mPower app to make it easier to use, more informative, and more engaging. We are also introducing new features. If it’s been a while since you’ve used the app, now is a great time to start again.

We heard your requests for better instructions. We have worked hard to make the activity instructions direct and clear. We also heard your requests for new modules. mPower v1.3 has new modules, including new activities and daily check-ins. There are modules to track hand tremor, sleep quality, mental clarity, mood, and pain. We hope these modules will help you track more of your PD symptoms.

We are adding a new Monthly Report feature for people with PD. If you have PD and use the app regularly for at least 2 weeks then you can generate a Monthly Report. The Monthly Report summarizes your activity scores from the past 30 days. It also shows the average scores of participants of your same age who do not have PD. We hope that the Monthly Report will make it easier for you to share your data with your doctor.

We couldn’t have gotten this far without you! Thank you for participating and making mPower even stronger.

You can download mPower v1.3 from the App Store.

If you would like to contact us with feedback or questions, feel free to send an email to PDApp@sagebase.org.

Warmest regards,
Stephen Friend
Andrew Trister

About this Study

How can we better manage the symptoms of Parkinson’s disease (PD) together? Whether you have PD, are touched by someone who has or has had PD or you want to help, we invite you to participate in this study. Become a research partner!

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, why a person’s symptoms and side effects can vary over time, and what can be done to help manage these differences in symptoms day to day.

Learn More

Living with Parkinson disease means coping with symptoms that change daily. Yet these daily changes are not tracked frequently enough. New technologies allow people to record and track their health and symptoms in real time. This study, developed in concert with our advisory board, will monitor individual’s health and symptoms of PD progression like dexterity, balance and gait using questionnaires and sensors via the Parkinson mPower mobile phone application and wearable devices if available. By participating in this study you will help us learn the range of PD symptoms and find out whether mobile devices can help measure PD progression and manage these symptoms better. In this unique study you will be a partner in the research process.

Frequently Asked Questions

How this Study Works

The mPower application 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 and manage these variations, and to learn whether mobile devices and sensors can help measure PD and its progression to ultimately improve the quality of life for people with PD.

Learn More

If you decide to join the study you will need to download the study application on your mobile device. Everyone who enrolls will first complete a consent process, explaining the risks and benefits of the study. As part of this process you will also confirm your agreement to participate in this study. Afterward we will ask you some questions about the study and ask you to complete the electronic registration process. Registration will include entering your name, email address and other general information about yourself to verify your eligibility. Then periodically we will ask you to answer questions and perform some activities via your mobile phone. These questions may be about your health, exercise, diet, sleep and medicines, in addition to other surveys. The activities will be some brief tasks that you perform while holding your phone like walking, taping or balancing for a short period of time. In addition, if you are able to sustain moderate physical activity, we may send you motivational prompts to remain active. We will send notices on your phone asking you to complete these tasks and surveys. You may choose to act at your convenience and you may choose to participate in all or only in some parts of the study. These tasks should take you about 20 minutes each day. You have the right to refuse to answer particular questions or participate in particular aspects of the study.

Your study data will include your responses to surveys and the measurements from the phone itself when you perform an activity. A unique random code will be associated with your study data instead of your name. Your coded data (without your name and contact information) will be added to the data of other study participants and analyzed by the study team. Also, if you choose to, your same coded study data can be made available to other qualified researchers for this and future research. In the future, you will have a unique account that you can use to review your own data.

Download the mobile app

The mobile app will help you log your symptoms.

Perform simple tasks

We’ll ask you to do a few tasks and answer some questions about your health.

Track your health

You can use the health dashboard to track your health data.

Scientists make discoveries

Scientists will use your data to make breakthroughs in medical research and treatments.

Who is Eligible to Participate

You must be over 18 years old, live in the US and have a personal iPhone to participate. You do not need to have Parkinson disease to join this study and make a difference in the lives of people affected by PD.

Who is Running this Study

This study is sponsored by Sage Bionetworks, a 501(c)(3) nonprofit research organization, with funding from the Robert Wood Johnson Foundation. It was developed with guidance from our advisory board (Drs. Karl Kieburtz, Ray Dorsey, Caroline Tanner and Bastiaan Bloem) and Dr. Max Little.

Principal Investigator
Lara Mangravite, PhD
Sage Bionetworks (nonprofit)
Key Scientific Contributor
Stephen H. Friend, MD, PhD
Board Chair, Sage Bionetworks
Advisors
Karl Kieburtz, MD
University of Rochester Medical Center
Ray Dorsey, MD, MBA
University of Rochester Medical Center
Caroline Tanner, MD, PhD
University of California, San Francisco
Bastiaan Bloem, PhD
Radboud University Medical Center
Max Little, PhD
Aston University/MIT

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mPower is for research use only and does not provide medical advice, diagnosis or treatment.