Systemic sclerosis in Europe: first report from the EULAR Scleroderma Trials And Research (EUSTAR) group database

Abstract

An integral part of the EUSTAR mission was the development of a Minimal Essential Data Set, called MEDS. This consists of a simple two page form containing domains relating to basic demographics, disease subsets, autoantibodies, disease activity, disease duration, and organ involvement, including modified Rodnan skin score, body weight, and carbon monoxide transfer factor (Tlco, % of predicted). Also included are yearly follow ups and details of deaths, and the data are entered into an interrelational database located in Florence.