The ATHENA cohort is a nationwide observational cohort that monitors HIV management of all HIV-positive people in HIV care in the Netherlands since the introduction of highly active antiretroviral therapy (HAART) in the Netherlands in September 1996.
Stichting HIV Monitoring (SHM, Dutch HIV Monitoring Foundation) is responsible for maintaining the ATHENA cohort since 2002. Stichting HIV Monitoring’s mission is to further the knowledge and understanding of all relevant aspects of HIV infection, including comorbidities and co-infections (such as viral hepatitis), in HIV-positive persons in care in the Netherlands.
Detailed clinical and laboratory data from all enrolled HIV-positive adults and children are extracted from medical records, by trained data collectors in cooperation with the responsible HIV-treating physician using an extensive, standardised protocol. In addition, 13 laboratories electronically forward test results directly to SHM. The ATHENA cohort does not dictate scheduled study visits, examinations, or blood work; i.e. the frequency and type of visits, examinations, and laboratory measurements depend on both the participant and physician. Consequently, the cohort reflects routine HIV care, and follow-up time in the cohort is equal to follow-up time in HIV care in the Netherlands. If participants move from one HIV treatment centre to another, this transfer is registered and follow up continues at the new centre. Likewise, children who transfer from paediatric to adult HIV care remain in follow up.
On 1 January 2017, 19 035 HIV-1-positive participants were known to be in HIV care: 18.824 were aged 18 years or older, and 211 were below 18 years of age. The remaining 6.001 participants were no longer in care because they had died (N=2 776; 46%), were lost to care (N=1.734; 29%), or had moved abroad (N=1.491; 25%).
Since 2011, the annual SHM Monitoring Report provides an comprehensive overview of the trends over time in the HIV epidemic and the effect of treatment (https://www.hiv- monitoring.nl/english/research/monitoringreports/). In addition, a complete and up-to-date list of scientific publications is available online (https://www.hiv-monitoring.nl/english/research/publications/).
Key RESPOND Staff:
Principal Investigator: Ferdinand Wit, f.w.wit@amc.uva.nl
Data Manager: Mariska Hillebregt, m.m.hillebregt@amc.uva.nl
Website: https://www.hiv-monitoring.nl