Sharing Family Health Information About Sickle Cell Disease and Sickle Cell Trait
Who can participate?
You may be able to participate if:
- You have sickle cell disease or sickle cell trait OR you are related to someone with sickle cell disease or sickle cell trait
- You are 18 years of age or older
- You are willing to share your family health history and answer questions about how your family shares risk information about sickle cell disease or sickle cell trait
What can you expect?
Our study will include:
- A 45-60 minute phone interview
- A 45-60 minute online survey
- We will ask you to invite your family members to take part in our study
If members of my family participate, is my information still private?
- All the information that you share with us will be kept confidential, meaning no one outside of our research team, including members of your family, will have access to your responses or comments.
In addition, as in any research study: Your participation is completely voluntary! You do not have to answer any questions you do not feel comfortable with.
We want to learn more about how families with sickle cell disease and sickle cell trait interact.
- You (and all of the relatives you refer to our study who participate) will each receive compensation for your willingness to take part in our study and help us learn. We appreciate your time and effort!
- The results of this study may help us identify families' needs and how to develop ways to help families in the future.
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Last Updated: June 10, 2016