HIV Cohorts Data Exchange Protocol

The HIV Cohorts Data Exchange Protocol (HICDEP) is a protocol that allows for simple sharing of data from HIV cohorts by providing a standard format for datasets. It is used by several major HIV Cohort Collaborations such as CASCADE, COHERE, EuroSIDA, PENTA, EPPICC ART-CC and D:A:D. Its first version was presented at the 7th International Workshop on HIV Observational Databases on March 29-30, 2003, Fiuggi, Italy, and a summary was published in Antiviral Therapy.
The specification currently consists of 27 tables in a relational structure which cover most medical aspects of HIV patient histories used in clinical research, including pediatric aspects.
Despite the tremendous success of Anti-retroviral treatment there remain many questions about HIV and its effects on the individual. Since many events occur infrequently or relate to a small group of patients, it is necessary to pull information from different cohorts. The standardized format given by HICDEP not only simplifies merging data from multiple HIV cohorts, but also provides a set of quality control checks. Prior to HICDEP, each collaboration used proprietary protocols for data exchange requiring substantial data-management efforts, which are potentially error-prone.
Where possible, HICDEP relies on already published coding systems such as the WHO's or the .
Special emphasis was given to the different ways resistance data are collected and reported in research settings and routine clinical practice: for genotypic analyses nucleotide or amino acid sequences (level 1), amino acid changes (mutations) from a reference strain (level 2) and drug-specific resistance scores (level 3) were considered. On September 4, 2019 the current version 1.110 was released. For the development of the HICDEP standard, there was set up a discussion forum on the project website. In addition, to learn more about HICDEP and how it works, there is an e-learning module available on the EuroCoord training page.

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