Despite vast advances in antiretroviral therapy (ART) for people living with HIV, the search for a definitive cure still remains one of the greatest challenges. Most prospects for HIV cure lie in patients in which ART has been started during acute infection, since this limits the size of the HIV reservoir, narrows the diversification of HIV and preserves immune functionality. To evaluate the real impact of different cure strategies, a thorough understanding of early treated patients is essential.
The ACS-cohort of acutely HIV-infected patients was set up at the HIV Cure Research Center of Ghent University and rolled out in 5 AIDS Reference Centers and laboratories in Belgium. Since the timeframe of acute infection is short, the number of patients eligible for this study is limited and the data collected at every time point is extremely valuable. Therefore we wanted to create an optimal data capture strategy, that would enable us to longitudinally collect a wide array of data, including detailed demographics, psychological assessments, physical examination results, immunological and virological data.
In order to integrate this data, we searched for a comprehensive and secure online platform, that would be accessible from all participating centers. In collaboration with DNAlytics, an electronic database was designed on the Research Electronic Data Capture (REDCap) platform, powered by Vanderbilt University. The REDCap tool was fully customized to combine various types of data from the different participating centers, accounting for the data variability from different technology platforms. With the REDCap platform, we longitudinally collect 949 data points of varying nature, which provides us with an in-depth characterization of the patients. Currently 27 patients are enrolled in the ACS-cohort and we foresee to enroll an additional 40 patients.
The REDCap platform is the result of a close collaboration between the clinic and data specialists and will serve as the invaluable base for all future data analysis on the ACS-cohort. It will enable us to perform multidimensional characterization and identification of suitable subjects to test the various HIV cure strategies. This project demonstrates the power of a comprehensive data capture and data management plan in the field of HIV cure research. By extension, such data management strategy proves essential to enable data audit trail and continuity along projects.