To date the cohort includes over 5,000 patients who have received primary HIV care at UNC from 1996 to the present, representing over 10% of persons with HIV in North Carolina. This represents over 68,000 person-years of observation since 1996. Participants come from all 100 North Carolina counties, especially those with the highest prevalence rates of HIV. Overall, almost one-third are women and two-thirds are African American.
Thirty-five percent of the cohort lives in rural areas and on average patients travel 50 miles one-way to clinic. Over one-third of the patients have no health insurance coverage at their first HIV care visit, over a quarter have not finished high school, and over one-half live under the federal poverty line. The cohort is distinctive among large clinical cohorts in the US as its demographic profile represents the growing HIV epidemic in the southeastern US. Patients are presented with a tiered consent that allows them to participate in one or more levels, starting with contribution of their data, storage of existing and / or excess samples, collection of Patient Reported Outcomes and/or willingness to be contacted for study participation. Greater than 95% of patients provide full consent.