Finnish National HIV Register

Description:

The data was released to the Sandbox first time in release 14 (R14). Please refer to the readme file in the Sandbox directory for full details of the available data.

This release contains two data, patients data and follow-up data.

Patients data includes all FinnGen participants diagnosed as HIV-positive. Follow-up data includes follow-up for those patients, currently for years 2021 to 2024.

Sandbox directory:

The data is available in the following Sandbox directory:

/finngen/library-red/finngen_R[RELEASE]/hiv_register_1.0

Variables:

Patients data:

Name	Description	Values
FINNGENID	Study ID
GENDER	Gender	male / female
COUNTRY_OF_BIRTH	Country of birth	Finland / Foreign country
YEAR_OF_BIRTH	Year of birth
YEAR_OF_DEATH	Year of death
HIV_EVENT_AGE	Age in years at the first HIV diagnosis
APPROX_HIV_EVENT_DAY	Randomized date of the first HIV diagnosis*
AIDS_DG	AIDS diagnosis	yes / no
AIDS_EVENT_AGE	Age in years at the first AIDS diagnosis
APPROX_AIDS_EVENT_DAY	Randomized date of the first AIDS diagnosis*
HIVNH_FIRST_VALUE	First measured viral load (HIV-Nh), copies /mL
APPROX_HIVNH_DAY	Randomized date of the first HIV-Nh measurement*
CD4_FIRST_VALUE	First measured CD4 count (×10⁶) cells / L
APPROX_CD4_DAY	Randomized date of the first CD4 measurement*
APPROX_REGISTER_FU_START_DAY	Randomized date when patient was first recorded in the register*
APPROX_TREATMENT_FU_START_DAY	Randomized date when the patient first entered treatment follow-up: the earlier of their first clinic registration date or their first HIV-Nh measurement*
APPROX_CLINICAL_FU_START_DAY	Randomized date when the patient first entered follow-up at a care site*

*Randomized event day (within +/- 1-15 days)

Follow-up data:

Name	Description	Labels
FINNGENID	Study ID
YEAR_OF_FU	Follow up year
FU_END_REASON	Reason for possible end of the follow up	dead / moved abroad / moved to another clinic / unknown
HIVNH_LAST_VALUE	Last measured viral load (HIV-Nh) during the follow-up year
APPROX_HIVNH_LAST_DAY	Randomized date of the last viral load measurement (HIV-Nh) during the follow-up year*
MEDICAL_TREATMENT	Patient is on HIV medication treatment at the end of follow up year (31 Dec)	yes / no
GOOD_RESPONSE	Good treatment outcome at the end of follow up year (31 Dec). Patient on medication and last viral load measurement below 50	yes /no
APPROX_FU_FIRST_DAY	Randomized start date of the care relationship at the most recent care site during the follow-up year*
APPROX_FU_LAST_DAY	Randomized end date of the care relationship at the most recent care site during the follow-up year*

*Randomized event day (within +/- 1-15 days)

More information on HIV register (in Finnish):

https://www.thl.fi/kansallisten-laaturekisterien-raportit/hiv-rekisteri/