Lupus patient registry for better understanding and care

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Long-Term Extension of enpatoran for cutaneous lupus symptoms

  This extension study tests whether continuing enpatoran is safe and helpful for people with skin lupus who completed previous trials, for up to about two years.

  Recruiting Phase 3 EMD Serono · Troy, Michigan · NCT07840287

• Comparing two biologic induction regimens and standard mycophenolate therapy for active proliferative lupus nephritis over six months

  This trial will test whether biologic induction therapy with belimumab or telitacicept leads to better kidney responses over six months than standard mycophenolate-based treatment in people aged 14–65 with active proliferative lupus nephritis.

  Recruiting Phase 2 Nanjing University School of Medicine · Nanjing, Jiangsu · NCT07340463

• Enpatoran for adults with skin lupus, with or without systemic disease

  This 24-week test will see if enpatoran tablets reduce active skin lesions in adults with cutaneous lupus, with or without systemic lupus.

  Recruiting at 74 sites Phase 3 EMD Serono · Los Angeles, California and 73 other locations · NCT07332481

• A CAR-T therapy for hard-to-treat systemic lupus with or without lupus nephritis

  This phase 2a study tests a single infusion of ICG318 CAR-T cells in adults and eligible teens with refractory SLE, with or without lupus nephritis.

  Recruiting Phase 2 iCell Gene Therapeutics · Chicago, Illinois and 3 other locations · NCT07328581

• YTS109 cell therapy for relapsed/refractory autoimmune diseases

  This trial will try a single infusion of YTS109 immune cells to see if they are safe and help adults aged 18–65 with relapsed or refractory autoimmune diseases such as lupus, Sjogren’s syndrome, inflammatory myopathy, or ANCA-associated vasculitis.

  Recruiting Phase 1 China Immunotech (Beijing) Biotechnology Co., Ltd. · Tianjin · NCT07123519

• YTS109 cell therapy for relapsed or refractory autoimmune diseases

  This trial will try a single infusion of YTS109 cells to see if they are safe and help adults (18–65) with relapsing or refractory autoimmune diseases such as SLE, lupus nephritis, systemic sclerosis, inflammatory myopathy, or ANCA-associated vasculitis.

  Recruiting Phase 1 China Immunotech (Beijing) Biotechnology Co., Ltd. · Hefei, Anhui · NCT07104721

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.