Research Accelerated by You Lupus Registry

Part of paid clinical trials in Washington D.C., District of Columbia.

Sponsor
Lupus Foundation of America
Study ID
NCT06927219
Status
Recruiting
Apply to this trial

Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Oct 1, 2020
Status verified
Jan 2026
Primary completion
Sep 30, 2030
Completion
Dec 31, 2050

Study Design

Enrollment
10,000 participants (estimated)

Arms

  • Arm: 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

Primary Outcome Measure

Functional Assessment of Chronic Illness Therapy-Fatigue Scale [ Time Frame: Over a 10 year period ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Online Registry - No Physical Site RequiredWashington D.C.District of Columbia20037-

Find similar trials in Washington D.C., DC

By research site
Online Registry - No Physical· Washington D.C., DC

Related Studies