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History

The New York State Multiple Sclerosis Consortium (NYSMSC) is a regional affinity group of 15 multiple sclerosis (MS) centers throughout New York State, organized to assess demographic and clinical characteristics of MS patients attending the Centers.

The NYSMSC, founded by the late Dr. Lawrence D. Jacobs, is currently headed by Bianca Weinstock-Guttman of the Jacobs Neurological Institute (JNI). at the UB School of Medicine. The JNI, part of the Department of Neurology of the State University of New York at Buffalo, is the coordinating center of the NYSMSC and managed by Caila Vaughn, PhD, MPH.

The Consortium was funded at its inception in 1994 by the New York State Department of Health, Commissioner’s Priority Pool. The Jacobs Neurological Institute (JNI), part of the Department of Neurology of the State University of New York at Buffalo, is the coordinating center of the NYSMSC. The two main bodies of the Consortium are represented by the Executive-Financial and Scientific Review Committees. The Executive-Financial Committee is the principal oversight body for the scientific mission of the NYSMSC. Its duty is to develop and approve bylaws, to define and structure the policies and procedures, to create new mission statements, to ensure high ethical and professional standards within all studies, to initiate and coordinate public and private collaborations with individuals and organizations, and to oversee the financial stability of the Consortium (fundraising and managing of NYSMS financial resources). At the moment, the Executive-Financial Committee comprises 8 members. The Scientific Review Committee’s primary role is to review research proposals submitted by Research Interest Groups for potential protocol development and implementation, to determine whether proposed studies fit into the Consortium’s scientific objectives, and if they are of sufficient priority within the overall NYSMSC agenda to commit resources, to establish whether there is an overlap with other studies either within or outside of the NYSMSC and to identify adequate funding sources for the proposed study. At the moment, the Scientific Review Committee includes 6 members.

The Consortium was established 10 years ago in order to develop a unique demographic-clinical long-term follow-up database of MS patients in the United States with a durable infrastructure and the potential for true interdisciplinary research, to maintain the quality of research through peer-review investigator-initiated studies, to facilitate greater participation in research amongst all NYSMSC members and to involve a broad, multi-disciplinary spectrum of academic and practice-based providers in the research studies. The NYSMSC also aimed to determine characteristics of the population that could arise from the basic research projects, with a special emphasis on those projects achievable through multi-center collaborative efforts but not possible through activities of one center alone.