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Procedure for External Data Requests

External Entities desiring data from the database will follow the following procedures:

  • External Entity will send a specific data query to the Executive Director and to the Consortium Coordinator at NYSMSC Administrative Office in Buffalo (see below)

    • Requests will be made in writing and sent via email or fax.

  • The Executive Director will review the request and distribute to the Scientific Review Committee for review. The Scientific Review Committee will decide to accept or reject the request. A rejection will be relayed to the External Entity by the Executive Director. An acceptance will be relayed to the Consortium Coordinator who will distribute the request to all affect sites for further approval.

  • If the request for data is accepted by any/all sites, the Executive Director will contact the requesting External Entity to initiate a formal agreement and contract, if applicable.

  • Once an agreement is in place, a data request will be sent to data management center by the Project Coordinator via email to: msc_data@udsmr.org

  • The data management center will respond to requests in accordance with the Policy.

  • Data generated from request will be forwarded by the Consortium Coordinator from the NYSMSC Administrative Office in Buffalo to the Executive Director and to the requesting External Entity.
       NYSMSC Executive Director
       Bianca Weinstock-Guttman, MD
       bweinstock-guttman@kaleidahealth.org

       NYSMSC Director of Research
       Caila B. Vaughn, PhD, MPH

              New York State Multiple Sclerosis Consortium
              The Jacobs Neurological Institute
              100 High St.
              Buffalo, NY 14203 (716) 859-3393 • (Fax) 859-3365

              hilbert2@buffalo.edu