Home | Site Map | Brochure | Contact Us
 
 

Policy for Internal NYSMSC Data Requests

All data queries will be made by individual sites using Crystal Reports unless it is not feasible to obtain the desired data by that method.  All data requests which will not be made via Crystal Reports will be submitted to the data management center by the NYSMSC Coordinating Center in Buffalo (see below).

Any Site making a non-Crystal Report data request will forward said request to the Administrative Office of the NYSMSC which is housed at The Jacobs Neurological Institute in Buffalo. The data request will be reviewed by the Project Coordinator to determine if the request is acceptable for processing (i.e if the request cannot be processed at the site via Crystal reports).  If accepted, the data request will be forwarded to the data management center for processing.  The data generated from the request will be forwarded to Buffalo and Buffalo will forward on to the requesting Site.  A Site may be charged $150 per hour for comprehensive or complex queries made using the data management center.  Fees will be deducted from the Site’s Quarterly payment for forms completed

The following criteria will be applied to all data requests:

  • A Site may request site-specific data for its own site at any time using Crystal reports.
  • A Site may request NYSMSC-wide pre-determined general data any time without directing to the Scientific Review Committee.  Sites should utilize NYSMSC-wide Pre-Determined Queries using the Crystal Reports System prior to submitting a request to the Coordinating Center; NYSMSC-wide data requests will be reviewed by the Project Coordinator for legitimacy prior to forwarding to the data management center, non-qualifying data requests will be returned o requestor without processing.
  • A Site seeking specific and multiple data variables for sites other than its own must submit a brief proposal of the purpose of the request with a brief description of the intended use of the data to the NYSMSC Coordinating office in Buffalo.  The proposal will consist of: Rationale, Significance, Objective and Feasibility of project.  A proposed budget (in NYSMSC budget format, appendix C) is required for all studies which receive specific funding support.

The proposal will be distributed to the Scientific Review Committee for review.

  • Proposals requesting clinical and/or demographic information will be approved or rejected on behalf the affected NYSMSC Sites by the Scientific Review Committee.  The Scientific Review Committee will render a decision within 5 business days of receipt of the proposal.  The action recommended by the Scientific Review Committee will be relayed to the Administrative Office at Buffalo, which will either forward the request to the data management center for processing or the requesting Investigator will be notified of the decision of the Scientific Review Committee to deny the request.

  • Proposals requesting therapy and/or treatment effect data will be reviewed by the Scientific Review Committee and a recommendation will be made to distribute the proposal to all affected Sites for review or the proposal will be rejected.  The Scientific Review Committee will make a recommendation within 5 business days of receipt of proposal. If the proposal is rejected in the indicated period, the requesting Investigator will be notified of the decision. The action recommended by the Scientific Review Committee will be relayed to the Administrative Office at Buffalo. If the proposal is recommended for further review, the proposal will be forwarded to the affected Sites for review.  Permission or Denial response will be requested within 5 business days from submission of request.  A failure to respond in the indicated period will be considered permission granted from said site.  The permission responses by the specific sites will be forwarded to the data management center for processing. The requesting entity will be notified of any site denying permission since such sites will be excluded from the request; data will only be divulged from approving sites.

Data requests received by Buffalo will be forwarded to the data management center within 3 business days from date of receiving request, or approval of request if necessary.  The data management center will provide data generated from said request within 2 business days.  Buffalo will forward said results to requesting Site within 3 business days from receipt of data from the data management center

Requesting Site will specify the form in which the generated data will be provided.  Data generated from request will be forwarded to requesting site in the form it is provided from the data management center.

The data management center will only honor data requests received from NYSMSC Administrative-Coordinating Office in Buffalo.  Participating NYSMSC Sites may not contact the data management center directly for data requests.

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


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 at NYSMSC Coordinating Center in Buffalo (see below).

    • Emails are to be sent to: Caila Vaughn at hilbert2@buffalo.edu
    • Faxes are to be sent 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 & Development
Caila B. Vaughn, PhD, MPH

New York State Multiple Sclerosis Consortium
At The Jacobs Neurological Institute, 100 High St., Buffalo, NY 14203
(716) 859-3393      ■      (Fax) 859-3365      ■        hilbert2@buffalo.edu