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Research Accelerated by You Lupus Registry
NCT06927219 · Lupus Foundation of America
In plain English
Click the button to translate this study into plain language — what it is, who qualifies, and what participation looks like.
Official title
Web-Based Data Collection Through the Research Accelerated by You (RAY) Lupus Registry
About this study
This is a multinational, direct-to-patient registry available to patients in the United States and Canada. The registry will enroll 10,000 people living with lupus who have a diagnosis of:
* Systemic Lupus Erythematosus
* Lupus Nephritis (Lupus Related Kidney Disease)
* Skin-Only Lupus (Cutaneous Lupus)
* Skin-Only Lupus With Scarring (Discoid Lupus)
* Lupus Caused By Medication(S) (Drug-Induced Lupus)
The registry will include questions about demographics, diagnostic journey, signs and symptoms, treatments, impact of lupus on health and quality of life, patient report outcomes and preferences related to clinical trials. The registry will also collect information about fatigue and work productivity.
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:
* People who are not living with lupus
Study design
Enrollment target: 10000 participants
Age groups: child, adult, older_adult
Timeline
Starts: 2020-10-01
Estimated completion: 2050-12-31
Last updated: 2026-01-23
Primary outcomes
- • Functional Assessment of Chronic Illness Therapy-Fatigue Scale (Over a 10 year period)
- • Work Productivity and Activity Impairment (Over a 10 year period.)
Sponsor
Lupus Foundation of America · other
Contacts & investigators
ContactJoy N Buie, PhD, MSCR, BSN · contact · buie@lupus.org · 202-924-4818
ContactDaniel McSkimming, PhD · contact · mcskimming@lupus.org · 202-349-1155
InvestigatorJoy N Buie, PhD, MSCR, RN · principal_investigator, Lupus Foundation of America
All locations (1)
Online Registry - No Physical Site RequiredRecruiting
Washington D.C., District of Columbia, United States