Overview

Overview

Historically, patient care and clinical research have been separate entities. As clinical documentation improved due to the implementation of electronic medical records, the opportunities for using carefully curated clinical data for research became more apparent. MS-PATHS is a multi-center data-sharing study, with each site collecting standard information on MS patients through the Multiple Sclerosis Performance Test (MSPT), standardized imaging sequences, and data pulled from the electronic medical record.

Through MS PATHS and a registry for clinical MSPT data, the Mellen Center is able to access both de-identified data from MS PATHS and fully identified data from the MSPT. Both data sources allow investigators unprecedented data on MS patients. As of October 2019, MS PATHS contained data from over 14,000 patients, and the Mellen Center MSPT database contained over 10,000 assessments. Data from MS PATHS is now available to investigators. Recent data requests include projects to improve understanding of meaningful change in NeuroQoL patient-reported outcome measurements, comparative effectiveness studies of different highly-effective disease modifying therapies, and relating quantitative MRI trajectories to patient reported outcomes and neuroperformance testing.

Contact

Malory Weber
weberm9@ccf.org

Funding

Biogen

Publications

Publications

The Multiple Sclerosis Performance Test (MSPT): An iPad-based disability assessment tool. RA, Miller D, Bethoux F, Rao SM, Lee J-C, Stough, D, Reese C, Schindler D, Mamone B, Alberts J. J Vis Exp 2014;30:e51318.  PMID: 25046650.

Processing speed test: Validation of a self-administered, iPad®-based tool for screening cognitive dysfunction in a clinic setting. Mult Scler J. 2017;23(14):1929-1937. SM, Losinski G, Mourany L, Schindler D, Mamone B, Reece C, Kemeny D, Narayanan S, Miller DM, Bethoux F, Bermel RA, Rudick R, Alberts J . PMID: 28080262.

Multiple Sclerosis Performance Test: Technical Development and Usability. Rhodes JK, Schindler D, Rao SM, Venegas F, Bruzik ET, Gabel W, Williams JR, Phillips GA, Mullen CC, Freiburger JL, Mourany L, Reece C, Miller DM, Bethoux F, Bermel RA, Krupp LB, Mowry EM, Alberts J, Rudick R., Adv Ther 2019; 36(7): 1741-1755. DOI: https://doi.org/10.1007/s12325-019-00958-x.

Technology-enabled assessments to enhance multiple sclerosis clinical care and research.Macaron G, Moss BP, Li H, Baldassari LE, Rao SM, Schindler D, Alberts JL, Weber M, Ayers M, Bethoux F, Boissy A, Chizmadia D, Conway DS, Fink C, Fox RJ, Gales S, Green B, Hara-Cleaver C, Jordan N, Mahajan KR, McGinley MP, Miller DM, Namey M, Rae-Grant A, Rensel M, Young H, Willis MA, Ontaneda D, Cohen JA, Bermel RA. Neurology: Clinical Practice 2019; DOI: https://doi.org/10.1212/CPJ.0000000000000710.

Members & Collaborations