Research Accelerated by You Lupus Registry

Launched by LUPUS FOUNDATION OF AMERICA · Apr 13, 2025

Keywords

ClinConnect Summary

The Research Accelerated by You (RAY) Lupus Registry is a study designed to gather important information about lupus, a chronic condition that can affect many parts of the body. The aim is to better understand how lupus is diagnosed, treated, and how it impacts the lives of those living with it. This ongoing study is open to adults with lupus and parents or guardians of children with lupus. Participants will fill out surveys every six months about their health, treatment experiences, and overall quality of life. The data collected will help improve care and support for people with lupus and contribute to future research.

To join the study, you need to be at least 18 years old and have a doctor’s diagnosis of lupus. If you are a parent or guardian of a child under 18 with lupus, you can participate on their behalf. It's also important that you can read and understand English and have access to a computer with the internet. The Lupus Foundation of America will maintain your privacy by ensuring that the information shared is de-identified, meaning it won't include any personal details. By taking part, you can help advance lupus research and improve understanding of this condition.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• * For adults with lupus, the individual who completes the Registry:
• • is 18 years of age or older
• • has a self-reported diagnosis of lupus by a physician or health care provider
• • is willing and able to provide informed consent
• • is able to read and understand English sufficiently to complete the survey questions
• • has access to a computer with an internet connection
• For children under 18 with lupus, the individual who completes the Registry is:
• • 18 years of age or older
• • the parent/legal guardian/legally authorized representative of a child under 18 years of age that has a diagnosis of lupus by a physician or health care provider
• • willing and able to provide consent for the child under 18 years of age and to obtain assent from the child between 7-17 years of age
• • able to access a computer with an internet connection
• • able to read and understand English sufficiently to complete the survey questions
• For adults with lupus unable to provide consent, the individual who completes the Registry is:
• • 18 years of age or older
• • the legally authorized representative of an adult 18 or older who is unable to provide consent and has a diagnosis of lupus by a physician or health care provider
• • willing and able to provide consent for the adult with lupus
• • able to access a computer with an internet connection
• • able to read and understand English sufficiently to complete the survey questions
• Exclusion Criteria:
• • -