Would You Share Your Info with an MS App?

by Ed Tobias | May 23, 2017

MS_Wire_Ed_Tobias
A smartphone app has been designed to collect lots of information related to your multiple sclerosis – things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data quickly, and by doing that, speed the process of discovering new MS treatments.

But, will MS patients be willing to share this kind of sensitive medical information with an app? To find out, researchers at the University of Southern California’s Keck School of Medicine have begun a pilot study of an app they call myMS. Patients will use myMS to track self-tests of their walking, mental ability, and vision. They’ll also answer life-quality questions, upload their brain MRIs, and even add the results of a genetic test.

Source: Keck School of Medicine at USC

“We have so much to discover about MS, and our traditional methods of studying it are not going fast enough,” Daniel Pelletier, MD, who designed this study, said in a press release. “Each incremental finding is like one drop of water in the ocean. If we want to reach the point of individualized therapy for MS, we need a massive amount of data, which is what inspired me to think of a solution that was completely out of the box.”

Save, see and share

myMS app users will be able to view their results, graph them over time, and compare them to other people using the app. They’ll also be able to see high-resolution images of their MRIs and access their genetic information, all on their smartphone. And, importantly, they’ll be able to share all of that data with their physicians.

“Not only will people be able to see how they’re doing in real time, but they will also be able to open new lines of communication with their doctors,” Pelletier said. “When they see their doctor, they’ll be able to open the app and show them how they’re doing in their everyday life and not just in the clinic.”

Are you willing to share info?

Researchers are looking for 200 people to enroll. Participants must have a diagnosis of MS, be at least 18 years old, have a brain MRI, live in the United States, and have a smartphone. No clinical visits will be involved.

If you’re selected, you’ll be asked to complete six-minute walking tests, cognitive function tests, visual acuity tests, and answer quality of life questions using the myMS app. Participants will be able to use their home computers to transfer all of their MRI scans to the app via a dedicated website. After three months, participants will be offered a free, optional, 23andMe genetics kit. Those who choose to use the kit will receive genetic reports containing information about their ancestry, personal traits, and a variety of inherited conditions — all of which will appear within the myMS app. Study participants will have the option to have their data shared with USC and qualified researchers worldwide, to benefit future research, or to only share it with USC.

“This study is just the beginning for myMS, Pelletier said. “Our ultimate goal is for the app to go viral so we can collect data from people around the world. It could be a powerful tool to get us closer to personalized medicine and breakthrough discoveries.”

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Linda S Sasser

This is not quite accurate. I live in Southern California, my health care is provided by Keck USC BUT the pilot study requires four visits to Keck over a year's time, which means that individuals with MS who do not live nearby, will probably not be able to participate. I will be moving out of California this summer and will not have the financial resources to fly to Los Angeles for the visits; otherwise I would like to participate to track the progression of my MS.

Ed Tobias

Hello Linda,

Thanks for your comment. The information that I received from Keck USC is that no clinical visits will be required. I'm checking further with the researchers and will post their response when I receive it.

Daniel Pelletier

Dear Linda,

Thank you for your interest in myMS. Allow me to clarify what we're trying to accomplish with this app. We're currently running two different studies with myMS. Both studies serve different goals and purposes. The one you're referring in your reply is a validation study that indeed requires visits at USC. We're selecting 75 patients from our clinic. We will compare traditional measures captured by health care providers against metrics captured through myMS at home.

The second study, as described in this article, is a pilot study that will be performed at home without having to come to our, or any, MS Center. We're testing the feasibility of collecting reliable data outside of the office. We will be recruiting 200 MS subjects that meet entry criteria.

Hope this helps to clarify better our research efforts to accelerate MS discoveries.

We're happy to be part of your care here at USC.

Sincerely,

Daniel Pelletier, MD
Director, USC MS Center

Ed Tobias

Thanks for taking the time to clarify this Dr. Pelletier.

Ronald Nelson

I live in Dayton, Oh so I won't be able to take the initial testing.

I am 76 years old and have had MS and was diagnosed when I was 24 years old. I have had neuropsychological evaluations and have continued with exercise activity for over fifty years. u
I would like to get involved in your programs if possible.

Ronald Nelson PhD

Ed Tobias

Dr. Nelson,

To indicate your interest in the program that I wrote about I'd suggest that you contact the researchers by clicking on the link to enrollment information that I included.

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