Harnessing real-time patient data to improve clinical outcomes and research: the multiple sclerosis partners advancing technology and healthcare solutions (MS PATHS) initiative
Author(s): ,
E.M. Mowry
Affiliations:
Johns Hopkins University, Baltimore, MD
,
R. Bermel
Affiliations:
Cleveland Clinic Foundation, Cleveland, OH
,
L.J. Balcer
Affiliations:
New York University School of Medicine, New York, NY
,
S.D. Cassard
Affiliations:
Johns Hopkins University, Baltimore, MD
,
E. Fisher
Affiliations:
Biogen, Cambridge
,
I. Izbudak
Affiliations:
Johns Hopkins University, Baltimore, MD
,
S. Jones
Affiliations:
Cleveland Clinic Foundation, Cleveland, OH
,
I. Kister
Affiliations:
New York University School of Medicine, New York, NY
,
G. Krueger
Affiliations:
Siemens Healthcare, Burlington, MA, United States
,
Y.W. Lui
Affiliations:
New York University School of Medicine, New York, NY
,
J. Perryman
Affiliations:
Cleveland Clinic Foundation, Cleveland, OH
,
D. Sickert
Affiliations:
Siemens Healthcare, Erlangen, Germany
,
J.R. Williams
Affiliations:
Biogen, Cambridge
R. Rudick
Affiliations:
Biogen, Cambridge
ECTRIMS Online Library. Mowry E. Oct 9, 2015; 115834; 1190
Ellen Mowry
Ellen Mowry
Contributions
Abstract
Abstract: P821

Type: Poster

Abstract Category: Clinical assessment tools

Background: Clinical research currently entails costly data collection methods that require resource-intensive involvement of research staff and providers, limiting their deployment to a subset of patients that may not accurately represent all people with MS. Routine care visits of the larger MS population represent opportunities to systematically collect standardized clinical and imaging data for clinical decision-making and research.

Goals:

1) To develop a collaborative network of MS Centres linked by technology-based, standardized, routine collection of neuroperformance testing, patient-reported outcomes, and MRI measurements with minimal impact on provider workflow, and

2) To establish a centralized, de-identified health information exchange database that functions in real time as a MS learning health system.

Methods: A large collaborative network of MS Centres called The Multiple Sclerosis Partners Advancing Technology and Healthcare Solutions (MS PATHS) is being created. At routine clinical visits, patients will self-administer tests analogous to the MS Functional Composite-4 on an iPad. The NeuroQOL and other relevant data will also be collected electronically. Standardized brain MRIs will be acquired on 3T Siemens scanners to enable quantitative image analysis. Participants will optionally enrol in a biobanking sub-study.

Results: Three US centres, with Biogen and Siemens, developed a governance structure to empower all collaborating parties. The initial implementation and validation of MS PATHS are underway. Key challenges have included establishing institutional awareness to implement informatics solutions and privacy and consent considerations. Initial enrolment is expected in the fall of 2015; more sites will be added in 2016.

Conclusions: The MS PATHS initiative represents a unique partnership that harnesses the independent strengths of MS clinical centres, radiologists, and the pharmaceutical, imaging, and information technology industries to create an integrated, efficient data collection system to improve clinical care and research.

Disclosure:

Project funded by
: Biogen & Siemens Healthcare

Ellen Mowry: E. Mowry has received research funding from Biogen and received free medication for a clinical trial from Teva Neuroscience.

Robert Bermel: R. Bermel has received consulting fees from Biogen, Novartis, Genentech, Genzyme, Mallinkrodt, and is part contributor to the intellectual property used in the MS Performance Test.

Laura Balcer: Dr. Balcer has served on a clinical trial advisory board for Biogen and performed consulting for Biogen and Genzyme.

Sandra Cassard: S. Cassard received funding by Biogen in the form of contract with her employer, Johns Hopkins University, to support effort on project.

Elizabeth Fisher: E. Fisher received consulting fees from Biogen, Genzyme, and Novartis, and funding for research studies from Biogen and Genzyme. She is employed by Biogen as of January 2015.

Izlem Izbudak: I. Izbudak received funding by Biogen in the form of contract with her employer, Johns Hopkins University, to support effort on project.

Stephen Jones: Dr. Jones received a speaker fee from Monteris.

Ilya Kister: Ilya Kister served on scientific advisory board for Biogen Idec and received research support from Guthy-Jackson Charitable Foundation, National Multiple Sclerosis Society, Biogen-Idec, Serono, and Novartis.

Gunnar Kreuger: G. Kreuger is an employee of Siemens Healthcare

Yvonne Lui: Nothing to disclose.

Janet Perryman: Nothing to disclose.

Daniel Sickert: D. Sickert is an employee of Siemens Healthcare.

James R. Williams: JR Williams is an employee of and stockholder in Biogen.

Richard Rudick: R. Rudick is an employee of and stockholder in Biogen.

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