The George Washington (GW) University School of Medicine and Health Sciences has announced that they and twelve other research centers are collaborating with the Scleroderma Research Foundation to launch the first national and patient registry for the use of people with scleroderma. The registry will be called ‘CONQUER’. You can read about this in more detail at the source press release, which can be found here at the GW School of Medicine and Health Sciences’ website.
Scleroderma is an autoimmune condition that can cause hard, thickened areas of skin. In some cases, it can affect the blood vessels and/or the internal organs, such as the lungs, heart, and kidneys. According to the NHS, there is a wide spectrum of severity in scleroderma, and for some people, the condition can cause severe and life-threatening problems.
There are two main types of scleroderma: localised scleroderma and systemic sclerosis. There are different forms of localised scleroderma, but it tends to just affect the skin. In comparison, systemic sclerosis, which also is classified into multiple types, may affect internal organs and the skin.
The planned CONQUER registry will involve collaboration between GW University School of Medicine and Health Sciences, the Scleroderma Research Foundation, and twelve other medical research centres throughout the United States.
CONQUER is designed to collect and store blood and a detailed clinical dataset from early-stage patients. Thousands of patients are hoped to participate, and each patient will be followed-up for multiple years. Researchers and other people will then be able to use this registry for clinical research and insight into patient care.
Dr Shanmugam, who is leading the initiative at GW, says that the registry is “much needed” and hopes that its creation will help doctors and researchers to understand scleroderma and, eventually, develop a cure.
For more information about the registry and the medical centres taking part, you can view the original press release here.