By setting up a national database of all cases and entering patients into trials 

Systemic sclerosis is a rare disease (about 10 cases/1 000 000/year) with a substantially higher mortality than other autoimmune rheumatic diseases.1 This, and an even greater morbidity, make it an unwelcome diagnosis for clinicians and a fearful one for patients. No cure exists, though much can be done to alleviate the organ based complications of the condition, and many different agents are used in an attempt to modify disease progression. Unfortunately, few drugs have been properly evaluated in clinical trials and even the standard treatments are not of proved efficacy.2 More aggressive therapies are now being tried in some centres—for example, immunoablation with autologous peripheral stem cell rescue3—and there is an urgent need to compare these novel regimens with standard treatments. How can we improve the management of this condition and ensure that management is based on the best possible evidence?

Research over the past 20 years has led to a clearer understanding of the cellular and molecular pathology of systemic sclerosis and implicated new causal agents. Substantial advances havealso been …