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Procedure for Internal NYSMSC Data Requests

NYSMSC Sites will utilize Crystal Reports for data requests when possible. Only data requests that cannot be made using Crystal Reports will be processed by the Administrative Office in Buffalo at The Jacobs Neurological Institute.

NYSMSC Sites desiring data from the database will follow the following procedures:

  • Site Investigator or Coordinator will send a specific data query by fax or email to the Administrative Office in Buffalo (see below). Emails are to be sent to: Caila Vaughn at hilbert2@buffalo.edu and Faxes to: Caila Vaughn at (716) 859-3365.

  • Request for site-specific data for requesting center and NYSMSC-wide general data will be submitted “as is.” Requests should be as specific as possible, including timeframe if applicable. Sites will specify the form in which the generated data will be provided.

  • Request for site-specific data for sites other than the requesting center must be submitted with a brief proposal including the specific purpose for which the data will be used. The terms of the request and the proposal will be circulated to all appropriate parties for review according to Policy. Requests should be as specific as possible, including timeframe if applicable. Sites will specify the form in which the generated data will be provided.

  • In the event that the request is unclear, the request will be returned to requester with specific comments/questions prior to submission to the data management center in order to ensure the intended response (i.e. NYSMSC Coordinating Center will not interpret and/or reword unclear requests).

  • In the event that the proposal for the research is unclear to the Scientific Review Committee, the request will be returned to requester with specific comments/questions prior to submission to the data management center in order to ensure the intended response. The Scientific Review Committee will contact the requester by the Administrative Office at Buffalo.

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

Data generated from requests will be forwarded to the requesting site in the form it is provided by the data management center.

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