Confidentiality

Patient Confidentiality is the Lupus Study's #1 priority! Study staff work every day to keep your information secure in the following ways:

  1. Have Certificate of Confidentiality through National Institutes of Health (NIH) NIH. All study materials/protocols are approved by 2 separate IRBs:
    • Oklahoma Medical Research Foundation (OMRF) IRB
    • University of Oklahoma Health Science Center (OUHSC) IRB
    Study consistently maintains HIPAA Compliance. Your personal information will be kept confidential.  You will not be identifiable by name or description in any reports or publication about this study.  Your personal information will not be released to other investigators without your written permission, except as required by law.

    The scientists at OMRF use your private information to create de-identified information.  De-identified information is information that does not specifically identify you and is not considered to be private information.  De-identified information can only be traced back to you through a code OMRF assigns to the information.  Your de-identified information would then become part of the de-identified information data bank.  OMRF would share your de-identified information with approved users of the research repository or other scientists.  This information includes information obtained from phone interviews, study questionnaires, medical records, and lupus testing results as well as serum, plasma, DNA, and blood cells.  Scientists could also use, keep, and share your de-identified information to develop new procedures or commercial products.

     A lupus serology profile is performed on all blood samples submitted by participants.  If you desire, results of this serology will be released to you, and, with your written consent, to your physician as well.

  2. Study Office is locked within a locked & guarded facility (the OMRF)

Every practical effort is made to protect the privacy of all participants.

Please feel free to contact the study with additional questions regarding confidentiality -
call toll-free at 1-888-655-8787.

 

About LFRR
Types of Studies
Study Participation
Recent Findings
FAQs
Flyers/Publications
Espanol
For Scientists/Physicians
Contact Us
LFRR Home
Oklahoma Medical Research Foundation

 

 

 

 

 

 

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