Farmaceutical company Novartis has launched a mobile research study to ultimately improve the lives of people with multiple sclerosis (MS) that collects data via their smartphone, without the need for clinic visits. The study, Evaluation of Evidence from Smart Phone Sensors and Patient-Reported Outcomes in Participants with Multiple Sclerosis (elevateMS), is designed to collect sensor-based data from physical tasks and symptoms. It aims to improve understanding of the daily challenges patients with MS can have and to uncover new potential measurements of treatment effectiveness through real-time data collection from participants in their everyday life.
App designed with input stakeholders
The elevateMS study was developed in partnership with Sage Bionetworks. The accompanying app was designed with input from patients, neurologists and advocates. Patients commented on the app’s user interface, what the study should measure, and how the app should track patient activity and disease symptoms.
The mobile application was built on the Apple ResearchKit platform. This platform allows study participants to contribute to research from home or on the go. At the same time, it enables researchers to collect data in the participant’s everyday environment. Novartis is still seeking people wanting to contribute data to the study.
New ways to look at disease progression
"As physicians, we always want to know how our patients with MS are doing on the treatments we prescribe," said Stanley Cohan, MD, PhD, medical director, Providence Multiple Sclerosis Center, Portland, Oregon and scientific advisor to the study. "With the elevateMS app, study participants can frequently document their symptoms in a personal health story. In turn, this data may provide researchers with new ways to look at disease progression and treatment effectiveness."
Using smartphones, the elevateMS application will capture participant responses to questionnaires, passive and active sensor-based movement data, and functional performance tasks completed by the participants. Participants will be able to use the application to view how their data changes over time. Researchers will use data from all participants to understand what it is like to live with MS. The names of participants will be replaced with a random code, so the researchers and study sponsor Novartis won’t know the individual’s identity.
The elevateMS study is open to US participants with and without MS who can download the application from the Apple App Store and provide their mandatory informed consent. Participants have a right to leave the study anytime they like. Additional information about the elevateMS study is available at www.elevatems.org.
Multiple sclerosis, a chronic disease of the central nervous system, affects around 400,000 people in the US alone. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS, where the immune system attacks healthy tissue. This form of MS is a potentially debilitating condition characterized by relapses with worsening neurological function, followed by periods of remission where patients partially or fully recover, during which the disease remains stable.