Nationwide and international registries on scleroderma. Past, present, and future

Abstract

Systemic sclerosis (SSc) is a low-incidence autoimmune disease that requires collaborative work through national or international registries to advance scientifically. The present systematic review aims to be an update of all national and international registries to date. In total, 7 first-world countries have SSc registries. In addition, there are also 3 international SSc registries plus 2 other registries focused on SSc-related pulmonary arterial hypertension. These registries not only carry out clinical research but also allow the collection of serum, DNA and tissue samples, as well as collaborative work to carry out randomized clinical trials and collaboration with other registries not directly focused on SSc.

Keywords

• Scleroderma. Systemic sclerosis. Registry.