Swedish InfCare HIV Cohort

The Swedish InfCareHIV cohort is a nationwide observational cohort that monitors HIV management of all people (>99%) with diagnosed HIV in Sweden since 2008, the majority since 2004, and significant number of patients at Karolinska University Hospital and South Hospital, Stockholm, since the 1980s. The cohort utilizes a software, InfCareHIV, which allows several functions: clinical decision support, national HIV quality assurance registry, long-distance consultation, self-reports of quality of life, and a research database.
Selected clinical and laboratory data from all enrolled people with HIV are extracted manually from medical records. Key laboratory data (e.g. HIV RNA, resistance data, viral sequences, CD4/CD8, hepatitis-serologies) are electronically transferred. The research database is updated daily. The InfCareHIV cohort does not dictate scheduled study visits, examinations, or blood work; i.e. the frequency and type of visits, examinations, and laboratory measurements are based on the clinical need. Consequently, the cohort reflects routine HIV care, and follow-up time in the cohort is equal to follow-up time in HIV care in Sweden. If participants move from one HIV treatment centre to another, this transfer is registered and follow up continues at the new centre. To date (August 2022), 13,029 people living with HIV have been included of whom 8,436 are currently in active care. Of those in active care 39% are women and 1.2% are children below 18 years of age. A majority was born outside Sweden (67%), most commonly in sub-Saharan Africa (36%). About half (51%) have stated heterosexual mode of transmission, and about a third are men who have sex with men or bisexual men (31%). Of the 4,483 people no longer on follow-up in InfCareHIV, 56% are deceased, 34% have emigrated and 3% are lost-to follow-up.
Key Staff:
Director of the Swedish InfCareHIV cohort: Prof Anders Sönnerborg MD, PhD, Karolinska University Hospital/Karolinska Institutet

Director of the Swedish National Quality Assurrance registry: Christina Carlander MD, PhD, Karolinska University Hospital

Steering committee: C Carlander, A Sönnerborg, M Gisslén, F Månsson, J Brännström, H Norrgren, O Elvstam, L Fohlin, L Mattson, Å Mellgren, S Blom, P Albinsson

Contact us: 
Anders Sönnerborg: anders.sonnerborg@ki.se 
Christina Carlander: christina.carlander@regionstockholm.se