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REVIEW ARTICLE
Year : 2013  |  Volume : 8  |  Issue : 6  |  Page : 55-59

Evaluating systemic sclerosis patients, which measures to use?


1 Department of Development and Regeneration, Skeletal Biology and Engineering Research Unit, KU Leuven; Division of Rheumatology, University Hospitals Leuven, Leuven, Belgium
2 Department of Development and Regeneration, Skeletal Biology and Engineering Research Unit, KU Leuven, Belgium

Correspondence Address:
Rene Westhovens
Department of Development and Regeneration, Skeletal Biology and Engineering Research Unit, KU Leuven; Division of Rheumatology, University Hospitals Leuven, Leuven, Belgium

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Source of Support: None, Conflict of Interest: None


DOI: 10.1016/j.injr.2013.11.012

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To improve the management of the disease and to help patients to a better outcome, it is important to understand the pathological mechanisms behind systemic sclerosis. Also intensive clinical and translational research is needed followed by implementation of the evidence. Systemic sclerosis is a rare heterogenic condition with different pathogenic mechanisms and with different organs being involved. In order to make progress appro- priate measures of the different disease aspects have to be developed. We overview the currently available validated instruments for systemic sclerosis that are supported by the OMERACT filter. The different aspects of their validation in this dis- ease are discussed as well as their feasibility. Many instruments still have shortcomings in validity or are to invasive to be regularly used; many domains of the disease still need proper evaluation instruments. Global disease activity and severity instruments as well as treatment response scales are awaiting full validation to assure optimal clinical research in the future. Appropriate evaluation instruments are essential in clinical research not only to mea- sure 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.


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