Recruiting

NCT Number: NCT06927219

Research Accelerated by You 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.

Recruiting

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Key information

Conditions

Systemic Lupus Erythematosus (SLE) Autoimmune Diseases Connective Tissue Diseases Cutaneous Lupus Erythematosus (CLE) Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Glomerulonephritis Immune System Diseases Kidney Diseases Lupus Erythematosus, Cutaneous Lupus Erythematosus, Systemic Lupus Nephritis Lupus Nephritis (LN) Male Urogenital Diseases Nephritis Skin Diseases Skin and Connective Tissue Diseases Urogenital Diseases Urologic Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Online Registry - No Physical Site Required

Washington D.C., District of Columbia, 20037, United States

Location status: Recruiting

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

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.
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.

Study contacts

Contact information is provided by the study sponsor or research team.

Daniel McSkimming, PhD

CONTACT

[email protected]

202-349-1155 ext. 165

Joy N Buie, PhD, MSCR, BSN

CONTACT

[email protected]

202-924-4818

Sponsors and collaborators

Lead sponsor

Lupus Foundation of America

Other

Registry information

Official study title

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

Acronym: RAY

Important dates

Study start: 2020
Primary completion: 2030
Study completion: 2050
First posted: Apr 15, 2025
Registry last updated: Jan 23, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting