https://resources.lupus.org/entry/enroll-in-a-lupus-registry

Enroll in a lupus registry

Lupus Foundation of America

Resource Content

What is a registry and what is the Research.forME™ Lupus Registry?

A registry is a place to store detailed information about individuals with a specific disease and their families. In this case, the Research.forME Lupus Registry is for individuals with a diagnosis of lupus. This registry will help researchers and people with lupus better understand the disease.

How do I participate in the Research.forME Lupus Registry?

The first step is to complete an online survey with screening questions that will help determine your eligibility. If you are eligible for the Registry, you will then need to review and affirm your consent to participate. Finally, you will need to complete a more detailed web-based survey, which will take about 45 minutes.

Who is eligible to participate?

Adults or children can take part in this study.

Adult participants must:

  • Be 18 years of age or older
  • Have a lupus diagnosis
  • Be willing and able to provide informed consent
  • Be able to read and understand English sufficiently
  • Have access to a computer with an internet connection

Participants under 18 (19 in certain states) must have an adult complete the registry. The adult must:

  • Be 18 years of age or older
  • Be the parent/legal guardian/legally authorized representative of the participant who has a lupus diagnosis
  • Be willing and able to provide consent for the child under 18
  • Obtain assent (agreement) from the minor participant, if they are between 13-17 years of age and are able to assent (Children under 13 are able to participate, although assent is not required)
  • Must have access to a computer with internet connection
  • Must be able to read and understand English sufficiently

For adults with lupus unable to provide consent, the individual who completes the registry must:

  • Be 18 years of age or older
  • Be the legally authorized representative of an adult 18 or older who is unable to provide consent and has a diagnosis of lupus
  • Be willing and able to provide consent for the adult with lupus
  • Have access to a computer with internet connection
  • Be able to read and understand English sufficiently

If I have questions about the Registry, who can I talk to?

Please contact the registry coordinator at registrycoordinator@lupus.org with any questions.