San Francisco, CA (July 17, 2026) – The Scleroderma Research Foundation (SRF)—the country’s first and leading nonprofit investor in medical research into scleroderma—has created a new survey, the SRF Scleroderma Health and Resources Survey, so that people living with scleroderma can provide insights in the true burden of this disease, with the goal of aggregating this data to inform future research.
Anyone aged 18 or older who has been diagnosed with scleroderma by a qualified healthcare provider is eligible to participate—no matter how long they have lived with this disease. The survey is anonymous, takes less than 15 minutes to complete, and will be offered annually; it should only be completed once each year. To take the survey, click here.
“This data has the potential to illuminate burdens faced by people living with scleroderma that have gone unrecognized. Closing the gap between patient experience and clinical development is only possible with direct feedback from those living with this disease. I encourage every person with this disease to take the time to complete it, and I thank you in advance for sharing your experiences,” said Luke Evnin, PhD, Chairman of the Scleroderma Research Foundation.
All survey responses are anonymous. Nothing participants share will ever be published or reported in a way that could identify them. Individual responses are combined with those of other participants and analyzed only in aggregate.
The Scleroderma Health and Resources Survey combines two validated tools into one short survey: a Resource Utilization Questionnaire (RUQ), which captures participants’ healthcare use, assistive devices, and caregiver support over the past year, and a Scleroderma Health Assessment Questionnaire (SHAQ), which measures participants’ current health status and how scleroderma affects everyday activities, from dressing and walking to grip strength and mobility.
The SRF is the United States’ leading nonprofit investor in scleroderma research. Scleroderma, often misdiagnosed, is a rare and often life-threatening autoimmune disease that can cause fibrosis in the skin and other vital organs. In the most severe cases, complications can damage the heart, lungs, and digestive system. The SRF finds, funds, and facilitates the most promising, highest-quality research aimed at improved therapies and, ultimately, a cure for scleroderma.
About the Scleroderma Research Foundation (SRF)
The Scleroderma Research Foundation (SRF), a 501(c)(3) organization, was established in 1987 with a mission to fund and facilitate the most promising, highest-quality research aimed at new treatments and, ultimately, a cure for scleroderma. Led by a Scientific Advisory Board composed of some of the most highly regarded scientists in the nation, the SRF research program actively seeks out the leading scientific minds from disparate fields, including autoimmunity, immunology, genetics, and fibrosis, to join the scleroderma research community. In addition to its core research program, the SRF has also led the formation of several large-scale projects aimed at accelerating scleroderma research, including the highly innovative CONQUEST platform clinical trial—a first of its kind in rare autoimmune diseases. The SRF is also dedicated to educating people living with scleroderma and their caregivers about how to best manage the challenges of the disease. Stay engaged with the SRF at srfcure.org and via social media: Twitter, Facebook, and Instagram.
