New national scleroderma register set to boost research

A national register of patients with the rare but potentially fatal connective tissue disease, scleroderma, is being set up by doctors at the Royal Free Hospital in Hampstead, with the aim of boosting vital research.

The UK Central Register for Scleroderma is being developed as a national resource with a grant of more than £60,000 by the Arthritis Research Campaign, which already funds a number of research programmes into the condition.

Scleroderma is a severe connective tissue disease, which can affect the skin, blood vessels, muscles and internal organs such as the heart, lungs and kidneys. There is no cure, but new treatments are looking promising. However, difficulties with recruiting enough patients has until now made it difficult to test new drugs in trials and studies.

Dr Chris Denton is a consultant rheumatologist and ARC senior research fellow at the Royal Free Hospital in London - a leading centre in scleroderma research and treatment. – Dr Denton said, “the register would be extremely important as a national resource to stimulate research into scleroderma, particularly clinical trials and epidemiological studies”.

"The register will enable us to have greater access to a potential pool of patients," said Dr Denton, who has been developing the register with colleagues at the Royal Free for the past five years.

"It will help overcome the problem we have had for many years – because scleroderma is such a rare disease it's always difficult to recruit patients for studies and trials”.

"We've so far got more than 2,000 names on the register, and we estimate there are between 6,000 and 8,000 patients in the UK. Our goal is to try and get all of them on the register, to provide much more comprehensive recruitment for clinical trials than has been possible before."

GPs and rheumatologist will be encouraged to register their scleroderma patients in the register by a yet–to-be appointed co-ordinator. Patient support groups, such as the Scleroderma Society and the Raynaud's and Scleroderma Association, will also be targeted to encourage their members to ask their doctors to contact the register information line for a registration pack.

For more information please contact the ARC press office on 01246 541107.