Actively Recruiting
Research Accelerated by You Lupus Registry
Led by Lupus Foundation of America · Updated on 2026-01-23
10000
Participants Needed
1
Research Sites
1578 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Summary The Lupus Foundation of America (LFA) Research Accelerated by You (RAY) Registry is a fully remote, longitudinal registry designed to collect data from adults and children living with lupus. The primary goal is to better understand the diagnosis, treatment, care, and quality of life for those affected by the disease. Remote Participation This is a decentralized, online-only registry. Participation is conducted entirely through a secure web-based portal. There are no physical site visits or travel requirements; participants can contribute from any location with internet access. Participation Details Consent: Informed consent is completed electronically. Surveys: Participants complete electronic surveys upon enrollment and every six months thereafter. Data Types: Collected data is self-reported and includes demographics, diagnosis history, treatment information, and patient-reported outcomes (PROs), such as quality of life. Purpose and Data Use The LFA uses registry data to: Address Constituent Needs: Inform programs and resources for the lupus community. Advance Research: Share patient insights with to ensure therapies are developed with the consideration of what matters and what matters most to people living with lupus. Patient Engagement and Clinical Research Matching: Participants may be contacted to assess eligibility for patient engagement or clinical research opportunities or to complete specific sub-surveys regarding trial participation.
CONDITIONS
Official Title
Research Accelerated by You Lupus Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults with lupus who are 18 years or older with a self-reported diagnosis by a physician or healthcare provider
- Adults willing and able to provide informed consent
- Adults able to read and understand English sufficiently to complete surveys
- Adults with access to a computer and internet connection
- For children under 18 with lupus, the person completing the registry is 18 or older and is the parent, legal guardian, or authorized representative
- Consent can be provided for the child, and assent obtained for children aged 7 to 17 years
- The person completing the registry for a child can read and understand English sufficiently and has internet access
- For adults with lupus unable to consent, a legally authorized representative aged 18 or older with the diagnosis can provide consent and complete the registry
- The representative can read and understand English sufficiently and has internet access
You will not qualify if you...
- Individuals who do not have lupus
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Online Registry - No Physical Site Required
Washington D.C., District of Columbia, United States, 20037
Actively Recruiting
Research Team
J
Joy N Buie, PhD, MSCR, BSN
CONTACT
D
Daniel McSkimming, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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