Lupus Study Participation

All Study Participants will be asked to:
SLE-Patient Participation also Involves
Qualifying for Study Participation
What is Done with Your Blood Sample

Working with Your Recruiter
Who in My Family will be Recruited?
Costs of Participation
Travel
Potential Risks
Benefits of Participation

All Study Participants will be asked to:

  • read & evaluate the Consent Form
  • complete a questionnaire(s)
  • complete a disclosure form
  • donate a blood sample (approx. 70mL: about 5 tablespoons or 1/5 of a Red Cross donation unit)

SLE-Patient Participation also Involves

  • a phone interview with a study recruiter regarding
    • patient's lupus doctor(s)
    • lupus-related hospitalizations
    • various lupus symptoms
    • drawing the family tree
  • requesting of medical records by the study from the participant's doctors

Interested in filling out a secure, online interview through this webpage? Click here. (Lupus patients only, please.)

(Questions regarding Confidentiality? Click the link for more info.)

Qualifying for Study Participation
Unfortunately, not everyone who volunteers to participate will qualify for many different reasons. However, your recruiter will contact you regarding your family's status in the study. You may also contact your recruiter at any time.

What is Done with Your Blood Sample

  1. A group of tests important for evaluating lupus is performed. If requested, these results are sent to the participant.
  2. DNA in the blood is analyzed to
    • help determine which genes may be involved in lupus and
    • address other scientific questions as they arise
  3. A permanent cell line is established for possible use in future research
  4. Some blood cells are stored for use in future lupus research
  5. The materials and information provided are used to help conquer lupus.

Working with Your Recruiter
If you participate in the study, a recruiter will

  • answer all questions you have regarding the study
  • help you with all study paperwork
  • send you a kit containing all necessary study supplies
  • assist in arranging your blood draw, if needed
  • with your permission, contact & recruit various members of your family

Who in My Family will be Recruited?
Family members needed for study participation depend on these factors:

  • how the family's SLE affected members are related to each other
  • who is available/living/interested in participating

Not everyone in your family will be required for study participation. Generally, the study hopes to recruit the following family members:

  • the biological parents and grandparents of the SLE patient participants
  • 1-2 siblings of each SLE participant
  • in families with more than one SLE patient, the family members that link the lupus patients genetically

Your recruiter will best be able to tell you which family members will qualify to participate.

Costs of Participation
If you participate in the study, the study will

  • pay the blood drawing fee
  • pay for shipping the sample
  • nominally compensate you for your time & travel after you have completed study participation

Travel

  • You DO NOT need to come to Oklahoma to participate in the study
  • The Study has & continues to work with families in
    • all 50 United States
    • Canada
    • Puerto Rico (Spanish-speaking recruiters are available)
    • the US Virgin Islands
    • Jamaica
    • England
  • All study contact is by phone, email, US Postal Service and FedEx
  • Your travel will involve getting to & from your local lab for your blood draw

Potential Risks
The risks associated with the withdrawal of blood are minimal:

  • Occasionally, a person may experience tiredness.
  • There have been rare instances of dizziness or fainting.
  • A bruise may appear at the point of withdrawal.
  • In rare instances, infection has been known to occur.

Benefits of Participation

  • There are no direct benefits to participants; however, to help offset any expenses incurred, a minor monetary compensation will be provided to each participant who returns his/her blood sample and completed paperwork
  • Each participant's blood is evaluated for antibodies to different parts of normal tissue. These tests are
    • commonly used to help diagnose lupus, and
    • performed at no cost to the participant
  • Every participant becomes part of a large team of patients, family members, doctors, nurses, scientists, and staff who are all dedicated to finding the causes and cures for lupus to help end the suffering this disease now causes for so many
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Interested in Participating? See what Study Participation involves, email a Recruiter at
or call toll-free (in the USA, Canada, PR, VI) 1-888-655-8787 (1-888-OK-LUPUS)

LUPUS GENETIC STUDIES • OKLAHOMA MEDICAL RESEARCH FOUNDATION • 825 NE 13TH STREET MAILSTOP #5, OKLAHOMA CITY, OK 73104