The Multiple Sclerosis Partners Advancing Technology and Health Solutions (MS PATHS) patient cohort (P4.381)

Objective: To provide an update on the MS PATHS cohort including the prevalence of quality of life (QoL) impairment. Background: MS PATHS, a network of 10 healthcare institutions in the United States (7) and Europe (3), was designed as a Learning Health System (LHS), merging research with patient care by collecting standardized clinical and imaging data during routine visits. Enrollment is open to all MS and CIS patients seeking care at participating institutions who agree to share their data for research. Design/Methods: During routine visits, patients used an iPad-based device, the Multiple Sclerosis Performance Test (MSPT), to complete a standardized MS history, the Quality of Life in Neurological Disorders (Neuro-QoL) instrument and electronic adaptations of the MSFC. Standardized MRIs were acquired on Siemens 3T scanners and participants could elect to provide blood samples to a biorepository. QoL impairment was defined as a Neuro-QoL t-score ≥0.5 standard deviations (SD) worse than the Neuro-QoL reference population mean. Results: As of September 8, 2017, 6,362 patients had opted-in. Data from patients having completed ≥1 MSPT assessment (n=4998) indicate the MS PATHS cohort has an average age of 47.6 years (SD 12.6), is 81.8% white and 74.1% female. A relapsing-remitting disease course was reported for 63.1% of the cohort; ≥1 relapses in the past twelve months were reported by 51.2% of the cohort. The prevalence of QoL impairment included 27.9% for depression, 32.5% for stigma, 33.4% for fatigue, and 44.9% for participation in social roles. Conclusions: MS PATHS, the first LHS established in MS, should accelerate collaborative research in MS. Initial results highlight areas of unmet need including depression, stigma, fatigue, and ability to participate in social roles. Further descriptions of QoL impairment, its correlates, and status of longitudinal data collection will be presented at conference when enrollment is expected to be >10,000 patients. Study Supported by: This study was supported by Biogen (Cambridge, MA, USA). Disclosure: Dr. Bermel has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen, Genzyme, Genentech, Novartis. Dr. Mowry has received personal compensation in an editorial capacity for UpToDate (royalties). Dr. Mowry has received research support from Biogen, Genzyme, Teva, SunPharma. Dr. Krupp has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with as a speaker, consultant and/or participant on an advisory board from Biogen Idec, Novartis, Teva Neurosciences and Multicell; grant support from the National Multiple Sclerosis Society, National Institutes of Health and the Department of Defense. Dr. Krupp has received research support from research support from Novartis, Biogen Idec, Celgene Corporation and Genentech and support from the Lourie Foundation, Slomo and Cindy Silvian Foundation and the Multiple Sclerosis Foundation. Dr. Jones has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Siemens and Monteris. Dr. Naismith has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Acorda, Alkermes, Bayer, Biogen, EMD Serono, Genentech, Genzyme, Novartis, Teva. Dr. Boster has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen Novartis genzyme Genetech Teva medtronic. Dr. Boster has received research support from Biogen, Teva, Novartis, Genetech, Actellion, Roche. Dr. Hyland has nothing to disclose. Dr. Izbudak has received research support from funding from Biogen in the form of a contract with her employer, Johns Hopkins University (JHU); primary investigator on a research grant from Siemens paid to JHU. Dr. Lui has nothing to disclose. Dr. Hersh has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen Idec, Novartis, Teva, and Genzyme. Dr. Tackenberg has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Bayer Healthcare, Biogen, CSL Behring, GRIFOLS, Merck Serono, Novartis, Octapharma, Roche, Sanofi Genzyme, TEVA und UCB Pharma. Dr. Tackenberg has received personal compensation in an editorial capacity for Frontiers Neurology. Dr. Tackenberg has received research support from Biogen, Novartis, Merck. Dr. Tintore has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Bayer Schering Pharma, Merck-Serono, Biogen-Idec, Teva Pharmaceuticals, Sanofi-Aventis, Novartis, Almirall, Genzyme, and Roche. Dr. Rovira has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Bayer, Biogen, Bracco, Novartis, Sanofi, and Stendhal. Dr. Montalban has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Actelion, Bayer, Biogen, Celgene, Genzyme, Merck, Novartis, Oryzon, Roche, Sanofi and Teva Pharmaceutical. Dr. Kitzler has nothing to disclose. Dr. Ziemssen has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Almirall, Biogen, Bayer, Merck, Novartis, Roche, Sanofi, Teva for the consulting and speaking services. Dr. Ziemssen has received research support from Bayer, Biogen, Novartis, Teva, Sanofi Aventis. Dr. Jung has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Jung holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Plavina has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Plavina holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. DeMoor has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. DeMoor holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Fisher has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Fisher holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Kieseier has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Kieseier holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Pandya has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Pandya holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Williams has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Williams holds stock and/or stock options in Holds stock/stock options in Biogen. Dr. Rudick has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Employee of Biogen. Dr. Rudick holds stock and/or stock options in Holds stock/stock options in Biogen.