Swedish InfCare HIV Cohort

The Swedish InfCareHIV cohort is a nationwide observational cohort that monitors HIV management of all HIV-positive people (>99%) in HIV care in Sweden since 2008, the majority since 2004, and significant number of patients at Karolinska University Hospital and South Hospital, Stockholm, since 1980-thies. 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 HIV-positive persons are extracted manually from medical records. Key laboratory data (e.g. HIV RNA, resistance data, viral sequences, CD4/CD8, hepatitis) are electronically transferred. The research database is updated once a night. 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 HIVcare in Sweden. If participants move from one HIV treatment centre to another, this transfer is registered and follow up continues at the new centre.  On 17 August 2018, 7 666 HIV-1-positive participants (male 61.2%; female: 38.8%) were known to be in HIV care: 7 532 were aged 18 years or older, and 134 were below 18 years of age. The remaining 3 902 participants were no longer in care because they had died or had moved abroad.
Key Staff:
Director of the Swedish InfCareHIV cohort: Prof Anders Sönnerborg MD, PhD, Karolinska University Hospital/Karolinska Institutet anders.sonnerborg@ki.se
Director of the Swedish National Quality Assurrance registry Assoc prof Veronica Svedhem-Johansson MD, PhD, Karolinska University Hospital veronica.svedhem-johansson@karolinska.se​
Steering committee: Dr Bo Hejdeman MD, PhD, South Hospital; Dr Leo Flamholc MD, Malmö General Hospital; Associ Prof Hans Norrgren MD, PhD Lunds University; Dr Suzanne Wendahl MD Sunderbyns Hospital; Prof Magnus Gisslén MD, PhD Sahlgrenska University Hospital