What data
we collect

We collect the most relevant
data to provide a deep
understanding of HIV and
improve the lives of people
living with the infection.

When participants enter the cohort study, CoRIS gathers basic data on their sociodemographic (sex, date of birth, country of origin, education and employment) and epidemiological characteristics (most likely mode of transmission, first positive HIV test date, last negative HIV test date and its report form).

At the first appointment and during the follow-up of the study participants by the centre, we collect the following data: weight and height, blood pressure, HIV tests (CD4, CD8 and viral load) and basic blood test (hemoglobin, platelets, glucose, creatinine, albumin, AST, ALT, total cholesterol, HDL and triglycerides), AIDS-defining conditions, antiretroviral treatment, co-medication, drug, tobacco and alcohol use, and data regarding the end of follow-up, including information on death and causes of death.

In the specific hepatitis module, we collect data on hepatitis A, B, D and C serology and vaccination, as well as elastography results and hepatitis B and C treatment outcomes. In the non-AIDS events module, we gather data on non-AIDS defining cancer events, cardiovascular, metabolic, kidney and liver disease, skeletal-related and psychiatric events.

As of January 1st, 2019, with the aim to respond to new research proposals, we have added another two research modules: The STDs module, where we collect data on gonorrhea, syphilis, chlamydia, mycoplasma genitalium and genital herpes; The human papillomavirus (HPV) and anal cancer module, where we collect data on the vaccine for HPV, PCR test for HPV, anal-rectal cytology, anoscopy, biopsy and therapeutic procedures in participants having contracted the infection due to high-risk homo/bisexual intercourse.

Since that date, we also gather information about the use of pre-exposure prophylaxis (PrEP) prior to CoRIS cohort entry.

Furthermore, we have created the website within the framework of the project “Pregnancy in HIV-infected women: a multicentre cohort study”, which is overseen by CoRIS Coordination Unit. On this site, we collect data on pregnancy, gestation period and labour, and about the state of infants born to women participating in CoRIS between 2004 and 2019., para recoger información sobre embarazo, período de gestación y parto, y sobre el estado del neonato de las mujeres incluidas en CoRIS desde 2004 a 2019.

Likewise, we have designed a mobile app to gather data on the health-related quality of life of cohort participants. This initiative falls within the scope of the project “Health-related quality of life in HIV-infected patients from the CoRIS cohort (CoRIS-QoL)”. The main ideas behind this project are presented in a video that cohort participants will find upon downloading the app. You can watch it below.

What data we collect

If you would like more information about all the variables that CoRIS collects, click here. Furthermore, CoRIS encourages researchers to let us know which other data it is important for the cohort to gather. In order to do so, you must fill out the document “Request for inclusion of new variables in CoRIS” (download here). Please send this document by e-mail to CoRIS Coordination Unit Chief. Once we receive it, your request will be assessed by CoRIS Executive Committee. If the assessment is positive, the requested information will start to be collected in the following cohort update.

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