Clinical Trial Finder

Research Accelerated by You Lupus Registry

Study Purpose

The Lupus Foundation of America (LFA) Research Accelerated by You (RAY) Registry is an ongoing, voluntary, longitudinal study gathers data from adults with lupus and legally authorized representatives of children with lupus to better understand diagnosis, treatment, care, and quality of life. Participants provide informed consent and complete electronic surveys every six months. The LFA uses the data to address constituent needs, share clinical research opportunities, and advance lupus research by sharing de-identified data with approved third-party investigators. The LFA will promote participation via its website and email outreach to around 200,000 people connected to lupus. Participants may also be resurveyed to assess clinical trial eligibility and other factors related to trial participation. Types of self-reported data will include: demographics, diagnoses, treatment information and patient reported outcomes, including quality of life reports, which have been increasingly recognized as essential for assessing health outcomes.

Recruitment Criteria

Accepts Healthy Volunteers

Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms

 No
Study Type

An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes.


An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes.


Searching Both is inclusive of interventional and observational studies.

 Observational [Patient Registry]
Eligible Ages N/A and Over
Gender All
More 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:

-

Trial Details

Trial ID:

This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.

 NCT06927219
Phase

Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans.

Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data.

Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.

Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.
Lead Sponsor

The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.

 Lupus Foundation of America
Principal Investigator

The person who is responsible for the scientific and technical direction of the entire clinical study.

 Joy N Buie, PhD, MSCR, RN
Principal Investigator Affiliation Lupus Foundation of America
Agency Class

Category of organization(s) involved as sponsor (and collaborator) supporting the trial.

 Other
Overall Status Recruiting
Countries United States
Conditions

The disease, disorder, syndrome, illness, or injury that is being studied.

 Systemic Lupus Erythematosus (SLE), Lupus Nephritis (LN), Cutaneous Lupus Erythematosus (CLE)
Arms & Interventions

Arms

: 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

Interventions

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Lupus Foundation of America, Washington, District of Columbia

Status

Recruiting

Address

Lupus Foundation of America

Washington, District of Columbia, 20037

Site Contact

Safoah Agyemang, BS, MS

[email protected]

202-349-1160 #160

Powered By