Research Accelerated by You Lupus Registry (RAY)

January 22, 2026 updated by: Lupus Foundation of America

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

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.

Study Overview

Status

Recruiting

Conditions

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.

Study Type

Observational

Enrollment (Estimated)

10000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

  • Name: Joy N Buie, PhD, MSCR, BSN
  • Phone Number: 202-924-4818
  • Email: buie@lupus.org

Study Contact Backup

Study Locations

  • United States
    • District of Columbia
      • Washington D.C., District of Columbia, United States, 20037
        • Recruiting
        • Online Registry - No Physical Site Required

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

People diagnosed with systemic lupus erythematosus, lupus nephritis (lupus-related kidney disease), Cutaneous lupus erythematosus (CLE) or discoid lupus erythematosus (DLE)

Description

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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
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

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Functional Assessment of Chronic Illness Therapy-Fatigue Scale
Time Frame: Over a 10 year period
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
Time Frame: Over a 10 year period.
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.

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Lupus Foundation of America

Investigators

  • Principal Investigator: Joy N Buie, PhD, MSCR, RN, Lupus Foundation of America

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

October 1, 2020

Primary Completion (Estimated)

September 30, 2030

Study Completion (Estimated)

December 31, 2050

Study Registration Dates

First Submitted

March 12, 2025

First Submitted That Met QC Criteria

April 13, 2025

First Posted (Actual)

April 15, 2025

Study Record Updates

Last Update Posted (Actual)

January 23, 2026

Last Update Submitted That Met QC Criteria

January 22, 2026

Last Verified

January 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • Pro00020515

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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