The Multiple Sclerosis (MS) Leadership and Innovation Network (MS-LINK™) is comprised of networks working cooperatively to advance Multiple Sclerosis (MS) science and improve MS participant outcomes. In this study participants will be followed from the time of consent through the lifetime of the study (currently 3 years), unless the participant chooses to withdraw from the study. Collection of participant's medical history, including MS and treatment history, will be automated through extraction from the participant's electronic medical record (EMR) and other health information systems (for example, radiology). Participants will complete patient-reported outcomes (PROs) and other health-related information digitally. Participating participants will have access to their own data in an ongoing manner via a web-based Participant Portal.
Study Type
OBSERVATIONAL
Enrollment
2,182
Alabama Neurology Associates
Birmingham, Alabama, United States
Georgetown University
Washington D.C., District of Columbia, United States
Atlanta Neuroscience Institute
Atlanta, Georgia, United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts, United States
Memorial healthcare
Owosso, Michigan, United States
University of Nebraska medical Center
Omaha, Nebraska, United States
The Oklahoma Medical Research Foundation
Oklahoma City, Oklahoma, United States
The University of Texas of Austin
Austin, Texas, United States
University of Texas Health
San Antonio, Texas, United States
Patient-determined Disease Steps (PDDS) Scale Score
Time frame: Baseline up to 3 years
Patient Reported Outcomes Measurement Information System (PROMIS) Multiple Sclerosis (MS) Fatigue Score
Time frame: Baseline up to 3 years
Patient Reported Outcomes Measurement Information System (PROMIS) Multiple Sclerosis (MS) Physical Function Score
Time frame: Baseline up to 3 years
Patient Reported Outcomes Measurement Information System (PROMIS) Anxiety Score
Time frame: Baseline up to 3 years
Patient Reported Outcomes Measurement Information System (PROMIS) MS Cognitive Function Score
Time frame: Baseline up to 3 years
Patient Health Questionnaire 9-Item (PHQ9) Score
Time frame: Baseline up to 3 years
Wasson Health Confidence Scale Score
Time frame: Baseline up to 3 years
Health-related Quality of Life Assessed by Centers for Disease Control and Prevention Health-Related Quality of Life Measure (CDC HRQoL-14)
Time frame: Baseline up to 3 years
Work Productivity and Activity Impairment Questionnaire-Multiple Sclerosis (WPAI-MS) Score
Time frame: Baseline up to 3 years
Number of Participants with Reasons for Discontinued Disease-Modifying Therapies (DMT)
Time frame: Baseline up to 3 years
Number of Participants with Current Use of Disease-Modifying Therapies (DMT)
Time frame: Baseline up to 3 years
Duration of Disease-Modifying Therapies (DMT) use
Time frame: Baseline up to 3 years
Number of Participants With Adherence to Treatment as Assessed by Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)
Time frame: Baseline up to 3 years
Occurrence of Relapses
Time frame: Baseline up to 3 years
Occurrence of Multiple Sclerosis (MS) Symptoms
Time frame: Baseline up to 3 years
Number of Utilization of Healthcare Resources by Participants
Time frame: Baseline up to 3 years
Well-being of Participant Assessed by Physical Activity Diary
Participants can opt-in to use the Patient Portal to track their well-being in up to 9 domains like Sleep, Mood, Pain, Exercise, Mobility, Wellness, Energy, Bladder Function, Leisure activities.
Time frame: Baseline up to 3 years
Number of Participants with Response to Health Priorities and Goals
Responses of participants regarding concern of Multiple Sclerosis (MS) for next visit, priority and wellness goals, and how close they are completing the goal will be recorded.
Time frame: Baseline up to 3 years
Expanded Disability Status Scale (EDSS) Score
Time frame: Baseline up to 3 years
Multiple Sclerosis Functional Composite (MSFC) Score
Time frame: Baseline up to 3 years
Timed 25-Foot Walk Test
Time frame: Baseline up to 3 years
9-Hole Peg Test (9HPT) Score
Time frame: Baseline up to 3 years
Paced Auditory Serial Addition Test (PASAT) Score
Time frame: Baseline up to 3 years
Symbol Digit Modalities Test (SDMT)
Time frame: Baseline up to 3 years
Processing Speed Test (PST)
Time frame: Baseline up to 3 years
Number of Participants with Magnetic resonance imaging (MRI) History
Time frame: Baseline up to 3 years
Number of Participants with History of Fall
Time frame: Baseline up to 3 years
Number of Participants with Adverse Events of Interest
Time frame: Baseline up to 3 years
Number of Participants with Symptoms of Coronavirus (COVID)
Time frame: Baseline up to 3 years
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