External Entities (non-NYSMSC Sites) may request data from the NYSMSC database. Requests from External Entities will be made directly to the NYSMSC Executive Director with a copy to the Administrative Office/Consortium Coordinator in Buffalo.
External Entities will be required to submit a proposal of the purpose of the request with a brief description of the intended use of the data to the NYSMSC. The proposal will consist of: Rationale, Significance, Objective and Eligibility of the intended use of the data. No Proposal requesting the entire data set will be honored. Proposals will be submitted to the Scientific Review Committee.
- The Scientific Review Committee will review the proposal and a recommendation will be made to distribute the proposal to all NYSMSC Investigators for review or the proposal will be rejected. The Scientific Review Committee will make a recommendation within 30 business days of receipt of proposal.
- If recommended by Scientific Review Committee, the proposal will be forwarded to the Principal Investigator at all affected Sites with a request for permission for disclosure of the requested data.
- Permission or Denial response will be requested within 15 business days from submission of request. If after 15 business days, the Principal Investigator fails to respond, a second notice will be sent to the Site’s Alternate Contact if available; for any site without an alternate contact, a second notice will be sent to the Principal Investigator. A failure to respond from the Site Alternate Contact within five (5) business days from date of request will be considered permission GRANTED from said site.
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 membership sites.
Once all affected Sites have responded, or failed to respond in allotted time, the request will be forwarded to the data management center for processing.
If the proposal is rejected by the Scientific Review Committee, the requesting External Entity will be notified by the NYSMSC Executive Director or Consortium Coordinator.
An External Entity requesting data from the NYSMSC will be charged for services based on the following process:
- The complexity of the dataset request will be assessed. Fee for data request will be assessed based on said assessment.
- Non-profit entities will be charged a fixed rate of $20,000 plus the charge for specific data extraction and quality control.
- For-profit entities will be charged a fixed rate of $40,000 plus the charge for specific data extraction and quality control.
- Requesting Governmental agencies’ charge will be assessed on an individual basis.
- External Entities requesting data for use in a collaborative manner with NYSMSC and proposals involving an ‘add-on questionnaire’ will be evaluated on an individual basis for fees.