Research Accelerated by You Lupus Registry
RAY
Web-Based Data Collection Through the Research Accelerated by You (RAY) Lupus Registry
1 other identifier
observational
10,000
1 country
1
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2020
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
October 1, 2020
CompletedFirst Submitted
Initial submission to the registry
March 12, 2025
CompletedFirst Posted
Study publicly available on registry
April 15, 2025
CompletedPrimary Completion
Last participant's last visit for primary outcome
September 30, 2030
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 31, 2050
January 23, 2026
January 1, 2026
10 years
March 12, 2025
January 22, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (2)
Functional Assessment of Chronic Illness Therapy-Fatigue Scale
This 13-item scale measures self-report fatigue and impacts on activities of daily living and functioning. The scale as been validated in various disease areas including cancer patients, cancer survivors, rheumatoid arthritis and systemic lupus erythematosus.
Over a 10 year period
Work Productivity and Activity Impairment
This outcome measure evaluates impairments over the past 7 days in both paid and unpaid work due to an individual\'s health.
Over a 10 year period.
Study Arms (1)
Lupus Patients
This is an observational study of people living with systemic lupus erythematosus, lupus nephritis, cutaneous lupus erythematosus or a mixture of these diseases
Eligibility Criteria
People diagnosed with systemic lupus erythematosus, lupus nephritis (lupus-related kidney disease), Cutaneous lupus erythematosus (CLE) or discoid lupus erythematosus (DLE)
You may qualify if:
- 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:
- 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:
- 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
- +3 more criteria
You may not qualify if:
- People who are not living with lupus
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Online Registry - No Physical Site Required
Washington D.C., District of Columbia, 20037, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Joy N Buie, PhD, MSCR, RN
Lupus Foundation of America
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 10 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
March 12, 2025
First Posted
April 15, 2025
Study Start
October 1, 2020
Primary Completion (Estimated)
September 30, 2030
Study Completion (Estimated)
December 31, 2050
Last Updated
January 23, 2026
Record last verified: 2026-01
Data Sharing
- IPD Sharing
- Will not share