Recommendations on data sharing in HIV drug resistance research

• Published in: PLoS medicine Vol. 20; no. 9; p. e1004293
• Main Authors: Inzaule, Seth C, Siedner, Mark J, Little, Susan J, Avila-Rios, Santiago, Ayitewala, Alisen, Bosch, Ronald J, Calvez, Vincent, Ceccherini-Silberstein, Francesca, Charpentier, Charlotte, Descamps, Diane, Eshleman, Susan H, Fokam, Joseph, Frenkel, Lisa M, Gupta, Ravindra K, Ioannidis, John P A, Kaleebu, Pontiano, Kantor, Rami, Kassaye, Seble G, Kosakovsky Pond, Sergei L, Kouamou, Vinie, Kouyos, Roger D, Kuritzkes, Daniel R, Lessells, Richard, Marcelin, Anne-Genevieve, Mbuagbaw, Lawrence, Minalga, Brian, Ndembi, Nicaise, Neher, Richard A, Paredes, Roger, Pillay, Deenan, Raizes, Elliot G, Rhee, Soo-Yon, Richman, Douglas D, Ruxrungtham, Kiat, Sabeti, Pardis C, Schapiro, Jonathan M, Sirivichayakul, Sunee, Steegen, Kim, Sugiura, Wataru, van Zyl, Gert U, Vandamme, Anne-Mieke, Wensing, Annemarie M J, Wertheim, Joel O, Gunthard, Huldrych F, Jordan, Michael R, Shafer, Robert W
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 22.09.2023; Public Library of Science (PLoS)
• Subjects: AIDS (Disease); AIDS research; Anti-HIV Agents - pharmacology; Anti-HIV Agents - therapeutic use; Anti-Retroviral Agents - therapeutic use; Antiretroviral agents; Art history; Biological products industry; Biology and Life Sciences; Clinical significance; Clinical trials; Computer and Information Sciences; Coronaviruses; Disease resistance; Disease transmission; Drug development; Drug resistance; Drug Resistance, Viral - genetics; Drug therapy; Funding; HIV; HIV (Viruses); HIV Infections - drug therapy; HIV Infections - epidemiology; HIV-1 - genetics; Human immunodeficiency virus; Humans; Information sharing; Knowledge transfer; Management; Medicine and Health Sciences; Metadata; Methods; Mutation; Pandemics; Pharmaceutical industry; Phylogeny; Policy Forum; Privacy; Public health; Research and Analysis Methods; Rilpivirine; Viruses; United States
• ISSN: 1549-1676; 1549-1277; 1549-1676
• DOI: 10.1371/journal.pmed.1004293

• Human immunodeficiency virus (HIV) drug resistance has implications for antiretroviral treatment strategies and for containing the HIV pandemic because the development of HIV drug resistance leads to the requirement for antiretroviral drugs that may be less effective, less well-tolerated, and more expensive than those used in first-line regimens.  • HIV drug resistance studies are designed to determine which HIV mutations are selected by antiretroviral drugs and, in turn, how these mutations affect antiretroviral drug susceptibility and response to future antiretroviral treatment regimens.  • Such studies collectively form a vital knowledge base essential for monitoring global HIV drug resistance trends, interpreting HIV genotypic tests, and updating HIV treatment guidelines.  • Although HIV drug resistance data are collected in many studies, such data are often not publicly shared, prompting the need to recommend best practices to encourage and standardize HIV drug resistance data sharing.  • In contrast to other viruses, sharing HIV sequences from phylogenetic studies of transmission dynamics requires additional precautions as HIV transmission is criminalized in many countries and regions.  • Our recommendations are designed to ensure that the data that contribute to HIV drug resistance knowledge will be available without undue hardship to those publishing HIV drug resistance studies and without risk to people living with HIV.