Research Accelerated by You Lupus Registry

Description

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.

Conditions

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

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Study Overview

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Study Details

Study overview

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.

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

Research Accelerated by You Lupus Registry

Condition
Systemic Lupus Erythematosus (SLE)
Intervention / Treatment

-

Contacts and Locations

Washington

Lupus Foundation of America, Washington, District of Columbia, United States, 20037

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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
  • * 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
  • * 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

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Lupus Foundation of America,

Joy N Buie, PhD, MSCR, RN, PRINCIPAL_INVESTIGATOR, Lupus Foundation of America

Study Record Dates

2050-12-31