NCT06927219

Research Accelerated by You Lupus Registry

Web-Based Data Collection Through the Research Accelerated by You (RAY) Lupus Registry

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 10,000 (estimated)
• Sponsor: Lupus Foundation of America · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

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.

Detailed description

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.

Conditions

• Systemic Lupus Erythematosus (SLE)
• Lupus Nephritis (LN)
• Cutaneous Lupus Erythematosus (CLE)

Timeline

• Start date: 2020-10-01
• Primary completion: 2030-09-30
• Completion: 2050-12-31
• First posted: 2025-04-15
• Last updated: 2026-01-23

Locations

1 site across 1 country: United States