Lupus patient registry for better understanding and care
Web-Based Data Collection Through the Research Accelerated by You (RAY) Lupus Registry
Lupus Foundation of America · NCT06927219
This study is collecting information from adults with lupus to help improve understanding and care for the disease.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Sex | All |
| Sponsor | Lupus Foundation of America (other) |
| Locations | 1 site (Washington D.C., District of Columbia) |
| Trial ID | NCT06927219 on ClinicalTrials.gov |
What this trial studies
The Research Accelerated by You Lupus Registry is a voluntary, ongoing observational study that collects data from adults with lupus and their representatives to enhance understanding of the disease. Participants complete electronic surveys every six months, providing information on demographics, diagnoses, treatments, and quality of life. The data gathered will be used to address patient needs, share clinical research opportunities, and advance lupus research by making de-identified data available to approved researchers. The Lupus Foundation of America promotes participation through outreach to a large community connected to lupus.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and older with a self-reported lupus diagnosis, as well as parents or guardians of children with lupus.
Not a fit: Patients who do not have access to a computer or the internet, or who cannot read and understand English may not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis, treatment, and quality of life for lupus patients.
How similar studies have performed: Other similar registries have shown success in advancing understanding and treatment of chronic diseases, indicating potential for this approach.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Washington D.C., District of Columbia
- Online Registry - No Physical Site Required — Washington D.C., District of Columbia, United States (RECRUITING)
Study contacts
- Principal investigator: Joy N Buie, PhD, MSCR, RN — Lupus Foundation of America
- Study coordinator: Joy N Buie, PhD, MSCR, BSN
- Email: buie@lupus.org
- Phone: 202-924-4818
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Systemic Lupus Erythematosus, Lupus Nephritis, Cutaneous Lupus Erythematosus, lupus, registry