R436-17-3. Requests for Access to Records for Research

(1) If the research does not involve the use of any personal identifying information from the vital records, the State Registrar shall provide the researcher with the requested statistical information upon receipt of the written request and payment of the associated costs.

(2) If the research involves the use of personal identifying information, the request must be in writing and must be signed by the researcher. In addition:

(a) The request must outline the research protocol to be used.

(b) If the research involves a follow-back or follow-up study, the request must describe who is to be contacted, how, by whom, and what questions will be asked. If a survey is planned, a copy of the survey must be submitted. Approval by an Institutional Review Board must be included with the request.

(c) If the research involves linking data files, the variables to be used to determine the match must be identified.

(d) The researcher and all persons who may have access to the identifying information in the vital records shall sign a Researcher's Confidentiality Agreement, which is available from the Bureau of Vital Records and Health Statistics.

(e) The researcher may not use or allow other persons to use the vital records information for any purpose other than the approved research.

(f) The State Registrar shall review all research requests upon receipt at which time one of the following outcomes may occur:

(i) The request is approved and the researcher is notified in writing of the approval and of the associated costs.

(ii) The request is given tentative approval and the researcher:

(A) is notified in writing of the approval and associated costs;

(B) discusses and resolves technical concerns identified by the State Registrar. (iii) The request is not approved and the researcher is:

(A) notified in writing the reasons for the disapproval;

(B) notified of the areas of concern with the request;

(C) allowed to address the areas of concern and resubmit the request.

(D) notified that the decision to deny may be appealed to the Executive Director of the Department of Health.