Case Study
RESPOND: The International Cohort Consortium of Infectious Disease and Outcomes of Antiretoviral Treatment
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Context
RESPOND was formed in response to the need for large-scale, collaborative HIV cohort studies capable of collecting high-quality data on individuals with HIV from across Europe and Australia and that can focus on answering questions that individual cohorts are not adequately powered to address, importantly including on clinical disease progression.
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Introduction
The RESPOND consortium builds upon the outstanding collaborative work in HIV cohort studies that has taken place in Europe and beyond over the last 20 years. This work has provided crucial information that has contributed to improving the lives of HIV-positive individuals. RESPOND will be based on an extremely successful and highly-experienced existing infrastructure, which will be adapted and expanded – including an inclusive network of clinics and cohorts and utilising the operational infrastructure used for EuroSIDA, INSIGHT and other key studies.
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Aims
The aim of RESPOND is to build an innovative, flexible and dynamic cohort consortium for studying infectious diseases – including HIV – as a generic structure for facilitating multistakeholder involvement.
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Method
RESPOND should be seen as a generic consortium with a core data collection module – or core study – onto which additional modules/studies can be added. Data can be entered at a patient level via a secure online platform or transferred from existing local, regional or national data structures. The outcomes with antiretrovirals module aimed to enrol 10,000 persons in 2017, increasing to 30,000 by 2019, collecting relevant information on comorbidities as well as HIV-related outcomes. The objective was to answer key research questions on long-term outcomes that could not be answered by individual cohorts alone. Notably, RESPOND is centrally validating all clinical events with rigorously-defined algorithms; this will ensure the highest-quality data from the cohort collaboration. Investigators or interested stakeholders are encouraged to develop clinically-relevant research proposals for this diverse data.
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Results
Some 27,000 persons were enrolled in RESPOND by October 2017, of which >10,000 have been exposed to the newest class of antiretrovirals, integrase inhibitors. A number of projects are ongoing, including uptake and response to integrase inhibitors compared to contemporary regimens. Topics include including clinical outcomes, as well as a comparison of two- versus three-drug antiretroviral regimens.
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Recommendations
All are encouraged to consider whether their cohort would like to join this innovative collaboration and to propose relevant research questions. Given the modular data structure, access to state-of-the-art data collection and the network of collaborators, researchers from other infectious disease areas are encouraged to use the structure to add further research modules whether or not they include people with HIV.
