Types of data collected:

Demographic: Date of birth, sex, race, SSN, address, marital status

Therapeutic: ARVs dose, frequency, route, start/stop dates, discontinuation reason

Concurrent treatments: All non-ARV drugs dose, frequency, route, start/stop dates

Laboratory (HIV associated): Plasma HIV RNA, CD4 count (%)

Laboratory (non-HIV associated): All other laboratories including blood counts, chemistries, lipid profiles, viral hepatitis serologies, toxoplasma serologies, etc.

Clinical (HIV/AIDS events): Date of HIV diagnosis, OIs with date of diagnosis, date / cause of death

Clinical (other events): All co-morbid conditions

Socioeconomic: Insurance status, employment status, employer name

Health services utilization and admin: primary and secondary insurance, co-payment requirement, visits kept, no shows, cancellations, social services, home health, hospitalization (within UAB healthcare system), other provider visits (within UAB healthcare system)

Patient based metrics: EuroQOL, HIV Symptoms Index, FRAM, ACTU-4, PHQ, AUDIT-C/ASSIST

Data collection interval:

Clinic cohort with real time follow-up

Data collection methodology:

Pre-2004, prospective data collected through in-person interviews, daily medical record abstraction by trained study personnel, computerized questionnaires. Post-2004, real-time data collection through a client-server based point-of-care EMR system.

Data quality:

Pre-2004, monthly quality monitoring and review. Post-2004, continuous quality improvement (CQI) with daily review of provider entered data.

 

Interval Cohort	Year	Data Capture
	1988	Standardized patient visit forms manually entered into computer database
	1995	Chart abstraction by trained clinic personnel including medications, problem list, and common labs with monthly quality control
	1999	Database expands to include health services utilization
Clinical Cohort	2004	Deployment of EMR with “real-time” data entry by providers at point-of-care marks transition from interval to clinical cohort
	2006	Implementation of 100% continuous quality control with recognition for excellence in information integrity
	2008	Database expands to include patient based metrics (PBMs); Depression (PHQ), Anxiety (PHQ), ARV Adherence (ACTU-4), Alcohol use (AUDIT-C), Drug use (ASSIST), Symptoms (HIV-SI), Quality of life (EuroQOL-5D), Body Morphology (FRAM)