Evaluating systemic sclerosis patients, which measures to use?

Appropriate evaluation instruments are essential in clinical research not only to measure current disease state but also to determine prognosis and predict organ damage and eventual premature mortality. They should also deal with patient-specific aspects as coping, illness perceptions, self-esteem etc. in a chronic disease as scleroderma. Once established they will definitely contribute to optimal daily care of patients. This is only achievable with the collaboration of different experts and with the set-up of large patient cohorts of scleroderma in different countries that are followed prospectively and make appropriate validation possible.