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Policy for Data Ownership

Data collected, either intellectual or material, by an investigator of the NYSMSC under the auspices of the NYSMSC is the property of the NYSMSC. In the event that an investigator discontinues membership from the NYSMSC, data collected on behalf of the NYSMSC will remain the sole property of the NYSMSC and its remaining investigators.

An investigator who has discontinued participation with the NYSMSC may request NYSMSC data for his/her use by submitting a request following the Procedure for an External Data Request.

In the event that an investigator discontinues participation, the material obtained from NYSMSC Registrants will be transferred to a remaining investigator at the Site, if said investigator agrees, or the material will be transferred to the NYSMSC Coordinating Center (Buffalo) for maintenance.

Sites with more than one investigator may utilize an individual investigator identification system for purposes of patient ownership or payments. Investigators may complete that “Hospital/Clinic” space of the Registry or Follow-up forms identifying investigator ownership of the individual patient enrolled. The investigator then has the capability to permit or refuse use of his/her individual patients in collaborative research and/or request itemized statement of forms completed at time of Quarterly payment.

Enrolled patients who have not been identified by an investigator will be subject to consensus agreement of all investigators at the site. Payment for unidentified subjects will be issued to the site without attachment to any investigator.

Investigators will notify the NYSMSC Executive Director if discontinuing their membership or if transferring to another membership site.