The landmark Parkinson’s Progression Markers Initiative (PPMI) is now using a mobile app. By interacting with the app and carrying your smartphone with you, you can share information on how you move and feel. That data can help understand changes related to brain health.
Smartphones are packed with sensors that can measure how you move. PPMI has partnered with the health care company Roche to capture data with smartphone sensors through its Roche PD Mobile App. People participating in PPMI can add even more value to the study through the Roche PD Mobile App.
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Hear from experts — study leadership, an industry representative and PPMI participant — why the app is a critical part of PPMI.
How It Works
The app uses active tests, surveys and passive monitoring to collect data on your movement and activity levels.
- Active Tests or Surveys: Each day when you open the app, you’ll be asked to complete a few questions and tests. One test may measure voice volume. Another may ask you to walk across the room and back to measure speed. The questions and tests may take about 12 minutes per week.
- Passive Monitoring: The app collects data when you are carrying or wearing your smartphone. This data can help us understand how movement patterns may change as you go about your daily routine. Once every two weeks, the app will ask permission to share passive monitoring data with researchers.
Data is encrypted and uploaded to secure cloud servers whenever you connect to Wi-Fi. You can also send data using a mobile network. (Note, you may have a mobile network data limit on your smartphone plan.) After the data is uploaded, it is removed from your smartphone. Like all PPMI data, any information that could identify you is removed. The data is kept on secure servers to protect your privacy.
How to Use the App
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1. Make sure you have a PPMI account.
You may have a PPMI account with an email address and a password. You could have made this account when you joined the PPMI online study platform (ppmionline.org). You may have done smell or genetic testing and created an account. Or you could have created an account with myPPMI, a web-based portal for PPMI participants.
Don’t have a PPMI account yet? Start by creating an account with myPPMI. Visit myppmi.org and click Login. That will bring you to a page where you can sign up. Create an account with an email address and password.
After creating your account, you’ll receive an email from myPPMI. It will come from support@myppmi.org and ask you to verify your account. Then you’ll be asked five questions to connect you with your PPMI profile.
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2. Download the app.
Visit the app store on your smartphone. This is Google Play on Android and App Store on iPhone. Search for “Roche PD Mobile App.” Download the free app.
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3. Log in to the app.
Use your PPMI account to register. This will connect your mobile app data to the other data you add to PPMI.
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4. Review and sign the informed consent.
Learn more about this part of the study. If you choose, sign the consent to continue.
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5. Use the app each day.
Use the app once a day during the first two weeks. Open the app every day to complete a selection of your tests.
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6. Share your data with PPMI.
Connect to Wi-Fi or allow mobile network upload to send your app data to PPMI. Transferred data will be deleted from your phone. This helps reduce storage on your phone.
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Questions?
Check below for answers to frequently asked questions on this part of the study. Can’t find what you’re looking for? Have a technical question? Email info@ppmidigital.org.
It’s easy to integrate the PPMI mobile app into my routine. And it’s a fun way to contribute to important research.
Marsha Colten
71; Stamford, CT; PPMI participant
Frequently Asked Questions
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Who can participate?
Anyone participating in PPMI can add to the study through the Roche PD Mobile App. If you are not a participant in PPMI yet, please visit ppmionline.org to get started in the online part of the study. Learn about other ways you can participate at michaeljfox.org/ppmi.
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What does passive monitoring measure?
Passive monitoring uses movement sensors on your smartphone. It collects data on how often, how far, how long and how fast you move. It does not share the location of your movement. The data it captures shares your movement patterns. Looking at those patterns across PPMI can help researchers understand different patterns in people with and without brain disease.
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Where should I carry or wear my smartphone for passive monitoring?
Passive monitoring collects sensor data when you are carrying your smartphone and are not performing active tests.
You can carry the smartphone in your pocket throughout the day. You can also carry it in your purse, bag or running belt. Please carry your smartphone in the same position on your body whenever possible. At first, passive monitoring will only be recorded on Android smartphones; the functionality will later be added for iPhones.
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How often do I need to carry or wear my smartphone for passive monitoring?
More data helps us move faster toward better understanding of health and disease. But we realize it may not be practical to carry or wear your smartphone all day. Please carry or wear your smartphone as much as possible. If you forget for a while or want to take a break, you can start again whenever you’d like.
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Can I use my tablet to use the app?
The app can be downloaded on your iPad or Android tablet. However, we recommend using your smartphone to perform the activities as some activities ask you to carry your device in a pocket. Also, it may not be possible for you to carry around your iPad or Android tablet throughout the day for passive monitoring.
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How important is good performance on the active tests?
When you do the active tests, please do not worry about how well you perform. Differences from week to week are normal. If you are finding it difficult to complete the tests, or are concerned about your performance, please talk to your doctor.
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Do I have to complete all activities at one time?
No, you can complete part of the activities and return back to them later. All the data you collected up to the point where the testing was interrupted is saved on your phone. To continue the tests or surveys, simply re-open the Roche PD Mobile App. When you press "Continue Active Tests" or "Continue Surveys", you will be taken back to the beginning of the test that was interrupted.
After the first two weeks (during which tests are scheduled daily) you will have a seven-day window to complete your tests before the next round of tests will be scheduled for you. You can stop at any time and continue later.
It is up to you what time you open the app. We recommend making it a part of your weekly routine by opening the app at a similar time each week. Please always perform these tests in a quiet and safe environment.
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What should I do if I accidentally interrupt an active test or survey by pressing the ‘Home’ button on the smartphone?
All the data from completed tests up to the point where the testing was interrupted is saved. However, data from the interrupted test will not be saved. You will need to start that specific test or survey again.
To continue the active tests or surveys, re-open the Roche PD Mobile App. When you press “Continue Active Tests” or “Continue Surveys,” you will be taken back to the beginning of the test that was interrupted.
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How much storage does the Roche PD Mobile App use?
The app should use a limited amount of storage. The app data stays on your phone until it uploads to the study. Data is uploaded when you connect to Wi-Fi. You can also upload app data using a mobile network (please note, this may use data on your mobile network data plan).
To allow data sharing through your mobile network, click Settings when in the app. Then click Data Usage and check “Upload using mobile data.”
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Do I need to use mobile network data to upload my data from the app?
We recommend connecting your smartphone to your home Wi-Fi to upload PPMI data. You can also upload PPMI data using a mobile network. Many people have a limit on their mobile network data usage. Uploading PPMI data on a mobile network may use some of that data. Going over that data limit may lead to charges from your data provider.
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How do I check that my PPMI data is uploaded?
Regular uploads ensure the data is safely backed up and available for researchers. It is good practice to check the status of uploaded data a few times a week.
Visit the Backup Overview section of your Settings in the Roche PD Mobile App. If the number of files “Awaiting Upload” is 24 or under, no action is required. If the number of files is large and does not decrease, then there may be an issue with your Wi-Fi connection. You may want to check your Wi-Fi connection or try another Wi-Fi network. You may consider uploading with your mobile network data.
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Where is my data sent?
Data is uploaded to the health care company Roche (F. Hoffmann-La Roche AG). Roche shares the data with the PPMI team. It is available to scientists to further study brain health and disease. Like all PPMI data, any information that could identify you (such as your name) is removed.
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How is my data kept secure?
This data is encrypted and uploaded to secure cloud servers. Every measure is taken to protect the privacy of your information. Information that could identify you (such as your name) is removed.
Scientists who want to study your data must apply to PPMI for access. They must sign a form that says they will protect your data privacy. Your information will not be sold and will never be shared outside the research community.
Still, as with all online activity, it is never possible to fully guarantee against breaches in security. PPMI takes significant measures to reduce this risk as much as possible.
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What if I switch to a new phone?
Please download and install the Roche PD Mobile App on your new phone. When you log in to the app for the first time on your new phone, your data history will automatically link. The app will then be deactivated on your old phone.
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How do I withdraw from this part of the study?
To withdraw from this part of the study, uninstall the app from your phone. No further data will be collected including from passive monitoring. The data that you already shared will remain in the PPMI database.
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Can I participate in other parts of PPMI if I want to stop using the Roche PD Mobile App?
Yes, you can still participate in other parts of PPMI if you want to stop using the Roche PD Mobile App.
