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Sharing Family Health Information About Sickle Cell Disease and Sickle Cell Trait

African-American family, blood cells, research studyWe are seeking interested individuals to participate in an exciting project conducted by the National Institutes of Health.  We are studying how families communicate and respond to sickle cell disease and sickle cell trait.  What we learn will be used to develop resources to help families affected by sickle cell.

We need your help! 
We want to interview you and your family members.

If you choose to participate in the study, what does it involve?

  • An online or telephone survey to complete.
    • The survey typically takes about 20-45 minutes to complete.
  • A telephone interview.
    • The interview will take about 45 minutes to one hour of your time.
    • The interviewer will ask you questions about your family and the important people in your life, including how your family shares information about sickle cell disease and trait. Information shared with us is private and not shared with other family members.
  • Because this is a study about families, health and communication, we will ask you if there are adult relatives we can also speak with about these same things.
  • Your participation is completely voluntary and you can withdraw from the study at any time. You will not have to answer any questions you do not feel comfortable with.
  • After completing each part of the study (survey, interview), you will receive a $25 gift certificate (total of $50 for both survey and interview) as a thank you for taking the time to participate in the project. 

If you are interested in participating in this project, please call (1-866-585-7192, ext.2) or e-mail us at SickleCellFamilyStudy@mail.nih.govWithin a week, someone from our study team will contact you, answer any questions you may have about this project, and schedule an interview time.

Study BrochurePDF file

We are very excited to learn about your experiences.

Laura Koehly, Ph.D.
P.I., Study# 12-HG-N149
Sharing Family Health Information about Sickle Cell Disease and Sickle Cell Trait
National Human Genome Research Institute
National Institutes of Health

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Last Updated: December 21, 2016