Riley Bove|Elizabeth Secor|Brian Healy|Alexander Musallam|Timothy E. Vaughan|Bonnie I. Glanz|Emily Greeke|Howard L. Weiner|Tanuja Chitnis|Paul Wicks|Philip L. De Jager
Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course
Harvard University|Brigham and Women's Hospital|Brigham and Women's Hospital|Brigham and Women's Hospital|Brigham and Women's Hospital|PatientsLikeMe (United States)|Brigham and Women's Hospital|Brigham and Women's Hospital|Harvard University|Brigham and Women's Hospital|Harvard University|Brigham and Women's Hospital|PatientsLikeMe (United States)|Broad Institute|Harvard University|Brigham and Women's Hospital
objectives assess potential online platform patientslikemecom plm research multiple sclerosis ms investigation role body mass index bmi ms disease course conducted illustrate utility platform methods first compared demographic characteristics subjects plm regional ms center second validated plms patientreported outcome measure ms rating scale msrs standard physicianrated tools finally analyzed relation bmi msrs measure results compared 4039 ms center patients 10255 plm members younger educated less often male white disease course often relapsing remitting younger symptom onset shorter disease duration differences significant large sample sizes small absolute terms msrs scores 121 ms center patients revealed acceptable agreement patientderived physicianderived composite scores weighted kappa 046 walking domain showed highest weighted kappa 073 correlation rs 086 patient physician scores additionally good correlations patientreported msrs composite walking scores physicianderived measures expanded disability status scale composite rs 061 walking rs 074 timed 25 foot walk composite rs 070 walking rs 069 ambulation index composite rs 081 walking rs 084 finally using plm data found modest correlation bmi crosssectional msrs rho 017 association bmi disease course conclusions plm population comparable clinic population patientreported msrs correlated existing clinical instruments thus online platform may provide venue ms investigations unique strengths frequent data collection large sample sizes illustrate applicability assessed role bmi ms disease course find clinically meaningful role bmi setting