Definition of the terms used to describe psoriatic disease datasets: a HIPPOCRATES initiative.

Abstract

Psoriatic arthritis (PsA) is a complex, multisystem disease with no diagnostic criteria and discordant approaches to assessing disease activity and response to treatment. PsA is part of the Psoriatic Disease spectrum, encompassing cutaneous psoriasis and nail changes, PsA and in some cases, uveitis and inflammatory bowel disease. The HIPPOCRATES consortium is addressing unmet needs in PsA and has now established a harmonised data platform, the Secure HIPPOCRATES Data Management Platform (SHDMP), which will be transformative in providing researchers with the ability to interrogate at scale psoriatic disease datasets. The SHDMP datasets are diverse and include people with psoriasis being followed for the development of PsA, as well as cross-sectional, observational and randomised control trial data on people with PsA. To better understand and describe the nature of the SHDMP datasets, the HIPPOCRATES consortium has now defined and agreed on the terms that will be applied to each dataset. In this short report, the process adopted to obtain consensus on the dataset definition and the final set of terms agreed upon is described and discussed. The agreement on the terms to be used will greatly enhance a researcher's ability to select the appropriate SHDMP datasets to study.