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Research Accelerated by You Lupus Registry

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

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
No age limits stated
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Questionnaires

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Surveys: Participants complete electronic surveys upon enrollment and every six months thereafter."
  • "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."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This online study collects information about adults and children living with lupus. It aims to better understand their diagnosis, treatment, care, and quality of life. Participants fill out surveys when they join and every six months, with no travel or in-person visits.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • The person filling out the surveys must be at least 18.
  • The adult or child with lupus must have been diagnosed by a doctor or other health care provider.
  • Adults with lupus who can give consent must agree to take part.
  • For a child under 18, a parent, legal guardian, or person legally allowed to act for the child must take part for them.
  • The child's representative must give permission. Children ages 7–17 must also agree to take part.
  • For an adult who cannot give consent, a person legally allowed to act for them must take part and give permission.
  • The person filling out the surveys must read and understand enough English to answer the questions.
  • The person filling out the surveys must have access to a computer with internet.

Who can't join

  • People who do not have lupus.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

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 sites (1)

DC