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Smartphones Capturing Multiple Sclerosis Data

iPhone

(JEShoots, Pixabay)

23 August 2017. A large-scale research study of physical challenges and symptoms in people with multiple sclerosis in the U.S. is capturing its data with smartphones rather than by visiting clinics. The study is sponsored by drug maker Novartis and conducted by Sage Bionetworks, a research institute based in Seattle.

The research aims to better understand the everyday problems and issues faced by people with multiple sclerosis, with much of the data contributed in real time. Multiple sclerosis is an autoimmune condition where the immune system attacks the central nervous system and damages myelin, the fatty, protective substance around nerve fibers, as well as nerve cells themselves. Scar tissue from the damaged myelin, known as sclerosis, distorts the nerve signals sent to and from the brain and spinal cord, causing symptoms ranging from mild numbness to loss of vision or paralysis.

A team led by Sage Bionetworks’ president Lara Mangravite plans to gather more detailed and contemporaneous data on multiple sclerosis symptoms, particularly as they effect the daily lives of people with the disease. The study, known as elevateMS — short for Evaluation of Evidence from Smart Phone Sensors and Patient-Reported Outcomes in Participants with Multiple Sclerosis — is capturing the data with Apple iPhones, model 5 or newer with operating system iOS 8 or later, using the phones’ built-in sensors and an elevateMS app downloaded from the iTunes store.

The study is open to people with multiple sclerosis in the U.S., age 18 and over, as well as healthy individuals who can also volunteer for the project and offer data for comparison purposes. In addition to data from sensors in their phones, participants will be asked to complete performance tasks and questionnaires, with data collected over time. Individuals will be first asked to provide their consent to take part in the study, and will receive a random code to mask their identity.

Participants can choose the level of data sharing with the research community, either by restricting access solely to the elevateMS team or more widely with other scientists registered at Sage Bionetworks’ Synapse research collaboration site. Individuals taking part in the study can access and download their personal data after providing three measurements.

The elevateMS app is based on Apple’s ResearchKit platform designed to make use of the iPhone and its features in biomedical research. ResearchKit has modules for gathering informed consent, constructing survey questionnaires, and capturing data from the phone’s built-in sensors. In February 2017, Science & Enterprise reported on an app used by Sage Bionetworks based on ResearchKit to collect images and data on skin moles for cancer research.

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Hat tip: FirstWord Pharma

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