UNVEIL Survey for Caregivers

General Survey Information and Eligibility Criteria

This study is in the form of survey designed to help us better understand your experience with caregiving for a friend or a family member with lupus. It will help us better understand the impact of caregiving on your life and well-being.
About 250 caregivers across the United States will take part in this survey. We are seeking participants who are 18 years or older and are caregivers of an adult (18 years or older) who have been formally diagnosed with systemic lupus erythematosus. If you are a caregiver of an adult who only has cutaneous lupus/discoid lupus that has not progressed to systemic lupus erythematosus, you are not eligible for this study. Cutaneous lupus/discoid lupus impacts people in different (but equally important) ways than systemic lupus erythematosus. More information and resources for caregivers are available here.

A caregiver is an individual who assists people with lupus with activities, including household chores, childcare, transportation to doctors’ appointments, shopping or self-care. A caregiver is not a professional and does not get paid to help. Often he or she is a friend, spouse or other family member of the person with lupus.

Survey Details and Compensation

The survey will take approximately 15 minutes to complete. You will have 2 days to complete the survey from the time you select the survey link and agree to participate.

As a thank you for your time, participants will receive a $30 Visa gift card. You will only receive a gift card if you complete the entire survey. You will be asked to enter your mailing address at the end of the survey if you wish to receive this thank you gift.

Survey Results and Confidentiality

All information you provide, including your name, email address, mailing address and your personal answers to the survey questions will be kept strictly confidential. ICON plc will not contact survey participants for any reason outside of this survey. If you have any questions, please contact the study staff at 0219-0690@iconplc.com.

The results of the survey will be used to strengthen public support for the lupus caregiver community by giving people a better understanding of the everyday emotional and financial challenges that caregiving for a person with lupus brings. The data will be shared with the public in different forms. These include academic and clinical presentations, manuscripts and press materials to ensure we bring your voice to a wide audience. Any form of public disclosure about the survey findings will not identify you or any other individuals who took part in this research.

Share your experiences today and help us better understand the challenges of living with lupus. The more we know about lupus, the better we can fight this devastating disease.

I want to participate. Take me to the survey!

Do you know others living with lupus or caring for someone with the disease? We need to hear from them too. Please click 'Share This Page' on the top right and help spread the word about the UNVEIL survey.


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