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Lupus Foundation of America Research Accelerated by You (RAY) Registry

This is a registry, not a treatment study, for adults and children living with lupus. It aims to gather information about how lupus (Systemic Lupus Erythematosus), lupus affecting the kidneys (Lupus Nephritis), and skin-only lupus (Cutaneous Lupus Erythematosus) affect people's lives. You can join if you are 18 or older, have a doctor's diagnosis of lupus, and can read English. The study will collect information over 10 years about your fatigue and how lupus affects your work and daily activities. This registry is currently enrolling 10,000 participants in the United States and Canada.

Study design
This is an observational registry designed to collect data from 10,000 people living with lupus. It is a decentralized, online-only study.
What's involved
You will complete electronic surveys upon enrolling and every six months afterward. There are no physical visits required.
Compensation
Not stated in the trial record.
Follow-up
Information will be collected over a 10-year period to track fatigue and work productivity.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06927219

Research Accelerated by You Lupus Registry

Recruiting
Not specifiedAll AgesObservational
Lupus Foundation of America
~10,000 participants
Updated 2026-01-23 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Functional Assessment of Chronic Illness Therapy-Fatigue Scale
Measured over Over a 10 year period
+1 more outcome measured

Conditions

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

Explore related trials

Cutaneous Lupus ErythematosusLupus GlomerulonephritisSystemic Lupus Erythematosus

Where it's being run

1 sites across 1 states
District of Columbia1

Study leadership

  • Joy N Buie, PhD, MSCR, RN · PRINCIPAL_INVESTIGATOR · Lupus Foundation of America

Who to contact

Joy N Buie, PhD, MSCR, BSN
[email protected]
202-924-4818
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

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
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
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

People who are not living with lupus

What this trial measures

  • Functional Assessment of Chronic Illness Therapy-Fatigue ScaleOver 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.

  • Work Productivity and Activity ImpairmentOver 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.