Parkinson’s disease (PD) is a chronic and progressive disease that often begins with mild symptoms that advance gradually over time. Symptoms can be so subtle in the early stages that they go unnoticed leaving the disease undiagnosed for years. iPrognosis app is a personal tool and research instrument to unobtrusively collect smartphone-based interaction data, share this information to researchers and develop tests for the early detection of PD.
i-PROGNOSIS, an EU H2020 research project, welcomes you to use the iPrognosis app to take part in a European study against Parkinson's. i-PROGNOSIS project proposes a radical approach to capture the risk of transition from healthy status to PD that is based on unobtrusive collection of behavioural data acquired from the natural interaction of the users with their smart devices.
How this study works?
iPrognosis app will obtain, in the background, data from your interaction with your smartphone. These data comprise analyses of speech, movement, and non-motor symptoms like mood. They were identified based on our existing knowledge of motor and non-motor symptoms of PD. To participate in this study, you will be asked to provide electronic informed consent. Following this, the iPrognosis app will run on your smartphone, silently in the background, free of charge and will capture your use and interaction with your smartphone during daily activities. This will not interfere with how you would normally use your phone or its daily functioning.
What data will be collected?
• Characteristics of your voice when making a phone call. The personal content of your call is never stored.
• How steady you hold your phone during calls or typing, using device sensors, such as the accelerometer.
• Keystrokes-related data when you type using the iPrognosis Keyboard. What you type is never recorded.
• The distance you covered each day, if you have location services activated and carry your phone around.
• Emotional content from your stored text messages. The content of your messages is not stored.
• Facial expressions from your stored photos. Photos never leave your device.
You can change which data are recorded in app Settings.
Data confidentiality and protection:
We will protect your data to the best of our ability. Your data will be encrypted on your phone and your name will be replaced with a coded ID and therefore your data will be pseudo-anonymised. Neither your name, nor your phone number will be used in any reports about the project. Microsoft Innovation Center Greece is the general responsible for data protection.
Who can participate?
Healthy volunteers or patients with early PD between the age of 40 and 90.
Possible benefits of taking part?
By participating in this study you will be contributing to a European Horizon 2020 project which is likely to develop an app to help early detection of PD. This could improve the management of PD and the development of future neuroprotective treatments. This study might also offer wider benefits to society and those with similar conditions.
Possible risks of taking part?
There are unlikely to be any disadvantage or risks by participating in the study. Moreover, iPrognosis app has minimum impact in your smartphone's battery life.
Withdraw from the study?
You can withdraw your consent at any point in time and stop participation and further data collection by selecting the 'Withdraw' option of the Consent section in the app Settings. By uninstalling the application, further data collection will cease.
This study has been reviewed and has been given ethics approval by:
- the Research Ethics Committee of the Technical University of Dresden, Germany,
- the Bioethics Committee of the Medical School of Aristotle University of Thessaloniki, Greece, and
- the Research Ethics Committee of the Faculdade de Motricidade Humana, Universidade de Lisboa, Portugal.