Scleroderma is an autoimmune disorder—a rheumatic disease that causes inflammation in the skin and other areas of the body. The name scleroderma literally means “hard skin” because the inflammation triggers the body’s own immune system to make too much collagen, leading to the hardening and tightening of the skin and connective tissues (ie: fibrosis). In the most serious cases, there can be complications resulting in damage to the heart, lungs, and digestive system.
Scleroderma is best thought of as a single disease. However, it is a complex disease that can progress in very variable ways in individual patients. Some are affected early with aggressive changes while others have milder symptoms. The disease might progress quickly or slowly. This makes a concise definition—and diagnosis—difficult.
Clinical trials are research studies in which people volunteer to help find answers to specific health questions.
There are many different kinds of clinical trials. They can study how to prevent, detect or treat disease and might involve testing new drugs or combinations of drugs, new devices, new ways of doing surgery, new ways to use existing treatments, new ways to change behaviors to improve health and/or new ways to improve the quality of life of people living with scleroderma. All clinical trials must follow strict rules set by the U.S. Food and Drug Administration.
After researchers test new treatments or procedures in the lab and sometimes with animals, the most promising treatments are moved into clinical trials. As new treatments move through trial phases, information is gained about the treatment, its risks, and its effectiveness. Your involvement can help researchers uncover better ways to treat, prevent, diagnose and understand scleroderma.
For general information about what clinical trials are and why you might consider participating in one, visit:
Please note that the Scleroderma Research Foundation does not recommend specific trials nor review each study.
At the Scleroderma Research Foundation, we take seriously our responsibility to the scleroderma community and work hard to maximize every dollar invested in our work. That commitment earned us a 4-Star rating from Charity Navigator and a Platinum rating on Guidestar, the highest ranking possible for financial accountability and transparency from two of America’s largest independent charity evaluators. To-date, the SRF has raised more than $40 million dollars to drive scleroderma medical research forward, so that—one day—no one will suffer from scleroderma. We recognize the value of support groups and advocacy, but ultimately, medical research holds the key to saving lives. Quite simply, the SRF provides more resources to talented scleroderma investigators than any other like-minded nonprofit organization in the country. Research is at the center of everything we do, and as we forge ahead with this laser focus, we remain committed stewards of the financial resources you entrust to us.
Read more about how the SRF maximizes every dollar that is invested in the Annual Report.
One of the principal benefits offered to the SRF supporters to ensure their gifts yield maximum results is our Scientific Advisory Board. The SRF goes beyond peer-reviewed research to drive research forward. This extraordinary team of scientific advisors are among the most talented and influential scientists in the world – not just in terms of scleroderma research – but medical research overall. Our advisors help to guide funding decisions throughout the year, culminating in an annual Science Workshop that brings together funded researchers, outside experts and new applicants. They bring a level of analysis to this meeting that ensures (1) only the most promising studies receive funding from institutions – far and wide; and (2) that the SRF funded researchers have access to other investigators so they can collaborate for the benefit of scleroderma patients. SRF funded researchers do not work alone. They collaborate with our advisors as well as others around the world to share data and results.