Understanding CDC Requirements for NIH Grants to Access the National Death Index (NDI)

CDC now requires new language be included in any NIH grant Notice of Award (NOA) to access National Death Index data. You will be contacted by CDC if this policy applies to you. In that case, you will need to reach out to your Program Officer and request an updated version of the NOA that includes this language. Some NOAs, however, may include this language already. NIH is often resistant to update NOAs, but faculty have been able to negotiate these updates with their PO.

For more information, read FAQ’s on the National Death Index.

The Notice of Award must include the following language about funding NDI searches:

This term is being included in this award because the recipient of this NIH award (grant, cooperative agreement, contract, or other transaction authority award) has sought access to National Death Index data from the Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS). This term serves as NIH’s agreement to the Supplemental Confidentiality Agreement of the Centers for Disease Control National Death Index (NDI) Application, with regard to any data for which the funding recipient applies to obtain from the NDI under this award. Specifically, this term provides assurance that NIH will not receive any of the identifying or identifiable death record information obtained from the NDI, state death records, and/or death record follow-back investigations. Additionally, consistent with 45 C.F.R. 75.303(e), the awardee must safeguard NDI data received from NDI consistent with applicable Federal, state, local, and tribal laws regarding privacy and obligations of confidentiality, which includes confidentiality requirements imposed by the CDC through the Supplemental Confidentiality Agreement of the NDI Application. For purposes of this award condition, consistent with the NDI Application, “Identifying or Identifiable death record data” means any information on death certificates, other paper documents, or in computer files which by itself, or if linked with other records, would permit the identification of one or more individuals or establishments; for example, name(s), Social Security number, exact dates, addresses, and death certificate number. Even with the removal of direct identifiers and linkable study subject identification numbers, there is still a special concern that some combinations of the remaining variables could potentially be used to identify an individual. For example, a combination of date of birth, date of death, and/or cause of death is considered identifiable. Upon demonstrated inclusion of this term, NCHS shall not require NIH officials to sign a Supplemental Confidentiality Agreement in order to grant recipient access to the requested NDI data, as NCHS will rely on this term as NIH’s assurance as set forth herein.