The Journal of Acquired Immune Deficiency Syndrome (JAIDS) recently published an article from investigators of the Pediatric HIV/AIDS Cohort Study (PHACS) that outlines the researchers’ experience using the National Death Index (NDI) to identify if any lost to follow-up study participants occurred due to death among the 4,207 participants enrolled in two PHACS cohorts.
The NDI is a centralized database of death record information on file in US state vital statistics offices, maintained by the National Center for Health Statistics. The NDI service is available to investigators solely for statistical purposes in medical and health research. The NDI webpage provides a reference list of 658 peer-reviewed articles from studies using NDI data. Permission to conduct an NDI search is obtained by completing a 23-page application.
PHACS is a collaboration between nine NIH institutes and close to 30 academic and research institutions, including study sites, two leadership centers based at Harvard and Tulane Universities, a contract research organization (CRO), and a data management center (DMC), investigating the long-term effects of HIV infection and antiretroviral medications in children and young adults who were born with or exposed to HIV.
The PHACS researchers searched the NDI to identify previously unreported deaths among lost to follow-up participants enrolled in two PHACS youth cohorts. Using the NDI, the PHACS group was able to document one previously unidentified death among the 231 LTFU study participants (0.4%).
Although it was a benefit to the study to be able to identify even one previously unknown death, the authors outline the methods and resources required to conduct the NDI search and conclude that for confidential HIV studies with a clinic-based design and multi-site cohort characteristics similar to PHACS, the use of the NDI was not a time- or cost-effective approach to obtaining mortality data.
The article is titled Utility of the National Death Index in Identifying Deaths in a Clinic-Based, Multisite Cohort: The Experience of the Pediatric HIV/AIDS Cohort Study. It was authored by Julie Alperen, Dr PH, Julie Davidson, MSN, Suzanne Siminski, MS, MBA, and George R. Seage III, MPH, DSc. for the Pediatric HIV/AIDS Cohort Study. The article can be found in the letters to the editor section of the JAIDS September 1, 2018 edition.
Links:
JAIDS Journal of Acquired Immune Deficiency Syndromes DOI: 10.1097/QAI.0000000000001763
JAIDS Journal of Acquired Immune Deficiency Syndromes: September 1, 2018 – Volume 79 – Issue 1 – p e37–e39
doi: 10.1097/QAI.0000000000001763
Letters to the Editor