The Scleroderma Health and Resources Survey

Your scleroderma experience has the power to shape the future of scleroderma research.

The SRF Scleroderma Health and Resources Survey focuses on the day-to-day impact of scleroderma, your healthcare experiences, daily challenges, and the caregiving needs you rely on. Your responses can help researchers better understand the true burden of the disease, so future clinical trials and treatments focus on outcomes that matter most to people living with scleroderma and their families.

This survey was most recently open from July 15 to September 15, 2026, and will re-open again next year.

What is the Scleroderma Health and Resources Survey?

The Scleroderma Health and Resources Survey combines two validated tools into one short survey: a Resource Utilization Questionnaire (RUQ), which captures your healthcare use, assistive devices, and caregiver support over the past year, and a Scleroderma Health Assessment Questionnaire (SHAQ), which measures your current health status and how scleroderma affects everyday activities, from dressing and walking to grip strength and mobility.

Why it matters

The SRF is committed to giving researchers the data they need to accelerate discovery and therapeutic development. By capturing the full impact of scleroderma—beyond what can be measured in the clinic—this survey helps inform research, clinical trials, and future treatments that better reflect real-world experiences of those living with this disease.

Who can participate

Anyone aged 18 or older who has been diagnosed with scleroderma by a qualified healthcare provider is eligible to participate. The survey takes less than 15 minutes to complete. It is offered annually and should only be completed once each year.

Anonymous by design

All survey responses are anonymous. Nothing you share will ever be published or reported in a way that could identify you. Individual responses are combined with those of other participants and analyzed only in aggregate. (Read our full privacy disclosure here.)

Interested in sponsoring the SRF’s annual Scleroderma Health and Resources Survey?

Contact research@sclerodermaresearch.org