The Albion Street Centre database, Sydney, Australia.

Abstract

The Albion Street Centre was established in 1985 as an HIV testing and early management center. More than 22,000 people have been screened for HIV and other blood-borne infections at the Centre, and approximately 3,600 people with HIV/AIDS have been managed there. Approximately 1,600 patients with various stages of HIV disease are currently managed at the Centre by a staff of 60 health care professionals and about 1,000 volunteers. The Albion Street Centre's computer database began recording selected demographic, epidemiologic, clinical, and laboratory characteristics when the first patient presented in 1985. Since then, the complexity and utilization of the database has increased in parallel with improvement in the understanding of the natural history and pathogenesis of HIV infection. Over 100 peer-reviewed publications and presentations have been produced from the database and 45 clinical trials have used the database to identify potential subjects. All data are de-identified and are protected by multiple password codes. Approximately 700 variables are collected from each HIV-positive patient at the initial visit to the Centre and up to 200 variables are added at each subsequent routine clinic visit. The variables collected include the following: standard epidemiologic characteristics; transmission and behavioral parameters, clinical signs and symptoms; laboratory test results; treatments; nutritional history; body composition parameters; psychological assessment results; and management history, including neuropsychological testing. The overall number and characteristics of patients recorded in the database are reported monthly, and are used to plan services, for prevention and educational programs, and as an indicator of the effectiveness of campaigns to encourage HIV-positive people to attend clinics for early management. When these patients have been identified they are invited to participate in the study. Individual patient records are identified and accessed if they meet certain criteria for flagging. For example, patients who have lost more than 5% of their maximal weight are flagged and referred to the dietician for assessment. Further uses for the database are to identify cohorts of patients who are seroconverters and to follow their natural history-the Centre has over 250 patients for whom a documented HIV-positive test has been obtained within 12 months of a documented HIV-negative test; to investigate clinical observations that have been associated with particular drug therapy, e.g., investigation of the reported association between the use of valacyclovir and the thrombotic thrombocytopenic purpura/hemolytic uremic syndrome (TTP/HUS)-like complex showed patients with terminal-stage AIDS demonstrated this syndrome independently of their therapy and probably as a consequence of multiorgan failure; and to document the relationship between nutritional intervention and survival, for which use of the database enabled an historical cohort that matched the cases under investigation to be selected. In conclusion, the database is a dynamic and integral part of the assessment, management, and research program of the Albion Street Centre, where it is used by all professional staff.