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MS Study Alert: Can an iPhone App Capture the MS Experience?

August 27, 2018

SUMMARY: Researchers at Duke University are seeking participants who have MS for a study to determine if data collected on a mobile phone can capture individuals’ experiences, increase communication during clinic visits, and improve understanding of multiple sclerosis.
 
DETAILS
Rationale: MS can involve a large variety of symptoms, such as numbness, walking difficulty, vision changes, and fatigue. In addition, individuals’ experiences with MS can be affected by whether they take their medications or side effects, emotional health, and environmental factors. This complexity makes each person’s experience with MS unique, and makes advancements in understanding of the disease more difficult. Researchers at Duke are seeking to determine if combining mobile phone-based data collection, machine learning (the capability of a smartphone to imitate intelligent human behavior), and patient participation in medicine can enhance our understanding of MS and increase patient-provider communication.
 
Eligibility and Details: Participants should be 18 or older, live in the United States, and be able to read and understand English. Participants who own or have daily access to an iPhone (iOS 9 or greater) will download the free MS Mosaic mobile application from the Apple App Store. Registration on the app may take 20 minutes to complete. NOTE: This app is not yet available for Android phones.
 
Individuals will receive daily, weekly and monthly questions about symptoms.  The daily surveys should take no more than 1 minute to complete, while the weekly surveys should take no more than 10 minutes. 
 
Participants also will be asked to perform specific tasks while holding or using the mobile phone, such as walking 25 steps, turning around, then walking 25 steps back while holding the phone to test walking; tapping on the phone screen repeatedly to test motor speed, coordination, and fatigue; or playing a short pattern game to assess short-term memory. The prompted tasks should take no more than 5 minutes to complete. 
 
Participants have the right to refuse to answer any question or refuse to participate in any task. All information that is collected through the app will be sent to a secure data server. Direct identifiers (name, email address, and date of birth) will be replaced with a code to protect individuals’ identities. Data will be analyzed using precautions to maintain confidentiality. Researchers will, however, retain the ability to re-identify the information if doing so is needed for research integrity purposes or legal purposes.
 
Participants will be able to export their data to share with their healthcare provider, if they wish.
 
Contact: To participate, please download the MS Mosaic app from the Apple App Store. If you have questions, please contact the researchers at ms-app@duke.edu.
 
Without participants in studies, MS research would come to a standstill. Read more here.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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