New scleroderma survey seeks patient input to guide future research
SRF questionnaire asks adults about disease burden, care needs, and daily life
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People living with scleroderma are being invited to take part in a new survey designed to better understand how the chronic autoimmune disease affects their daily lives. The findings may help guide future research and, ultimately, improve patient care.
The Scleroderma Health and Resources Survey, launched by the Scleroderma Research Foundation (SRF), is open to adults 18 and older who have been diagnosed with scleroderma by a qualified healthcare provider, regardless of how long they have lived with the disease. The survey takes less than 15 minutes to complete and will be offered once a year.
“This data has the potential to illuminate burdens faced by people living with scleroderma that have gone unrecognized,” Luke Evnin, PhD, chairman of the SRF, said in a press release emailed to Scleroderma News. “I encourage every person with this disease to take the time to complete it, and I thank you in advance for sharing your experiences.”
Survey explores scleroderma’s impact on daily life
Scleroderma occurs when the immune system mistakenly attacks the body’s own tissues, causing excessive inflammation and scarring that can damage tissues and organs throughout the body. Because symptoms can vary widely, based on the organs involved and the severity of the disease — and can resemble symptoms of other conditions — a diagnosis may be delayed.
The survey combines two validated questionnaires. The Resource Utilization Questionnaire (RUQ) assesses healthcare use, assistive devices, and caregiver support over the previous year. The Scleroderma Health Assessment Questionnaire (SHAQ) evaluates a person’s current health and how scleroderma affects everyday activities such as dressing, walking, grip strength, and mobility.
By asking people to complete the survey annually, the SRF aims to capture aspects of living with scleroderma that are often overlooked in clinical research.
“Closing the gap between patient experience and clinical development is only possible with direct feedback from those living with this disease,” Evnin said.
The SRF hopes the findings will help researchers better understand the burden of scleroderma, identify patients’ unmet needs, and inform future research priorities.
All responses will remain anonymous, and nothing participants share will ever be published or reported in a way that could identify them, according to the foundation. Individual responses will be combined with those of other participants and analyzed only in aggregate.
luke
Thank you for picking this up and boosting it. Looking for the broadest possible participation with the future attendant community benefits. Luke
Giane Estela Domingues Giuzio
Como posso participar da pesquisa?
Lesley Elrick
I was diagnosed with early scleroderma last May, I am happy to participate in any study.
I live in Aberdeen and 72 years old
Cecilia Bulva
Along with Raynauds I suffer from stiffness and difficulty recovering from post hip replacements and balance! Is this a symptom of Scleroderma or just weakness post op!
O A Stanton
I have suffered from the first symptoms of Scleroderma for more than 50 years (Raynauds), and this has progressed over the years to affect my lungs and my fingers and now requires regular monitoring by both a Respirologist and a Rheumatologist. And, the skin over my entire body has been impacted to some degree as well. I am very hopeful that this new endeavour will move towards at least some means to modify the symptoms in due course!
Liya KAfri
I am a43 year old patient from Israel. Can i contribute to the survey? I am also a doctor and can collect data from my patients
Deborah Cooke
I'm happy to take the surveys.
Carol Gillet
Interested in news about scleroderma research and treatment.
S Ripple
thank you for information on scleroderma
Joyce McLean
AI provides an additional time-saving tool for in-depth research on health issues. It can also be a starting point for investigation providing an overview. Frequently sited sources are Mayo Clinic and Cleveland Clinic (two of my own favorites). Mentor assistance is very helpful to gather a large body of articles on a topic that often lead to other useful terminology.
Vicky Kimpton
I’m happy to help with the survey. I have SS, my sister had it but she passed last year and my younger sister is also suspected to have it. She’s awaiting diagnosis.