The Sharing Family Health Information about Sickle Cell Disease and Sickle Cell Trait Study is exploring how families affected by sickle cell disease and/or sickle cell trait share information with each other about their family history and how they manage or discuss sickle cell trait and sickle cell disease.

Goals

We are studying how families communicate and respond to sickle cell disease and sickle cell trait. We would like to learn how talking about family risk information is related to personal relationships in families. What we learn will be used to develop resources to help families affected by sickle cell.

View the Study Flyer.

What's Involved?

You will be asked to participate in an online survey and telephone interview that will take about 45 minutes to one hour, each. Your participation is completely voluntary and you can withdraw from the study at any time.

The first step is to collect some information about your family and the important people in your life. We will collect this information by asking you questions and recording your answers into a computer file. 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. 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.

All of the information you give, such as survey answer choices, names and contact information will be kept confidential, and only the research study team will have access to this information. The researchers and project staff are trained to respect your privacy. Authorized project staff will process information you provide in the surveys then keep the materials in locked files. No one outside of our research team, including members of your family, will have access to your responses or comments. Project reports will not use your name or include anything you said that could identify you.

There is very little risk of harm as a result of participating in this study. There is a small possibility that you might find some of the questions upsetting. In that case, you can choose not to answer a question or you may stop the survey.

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.

Eligibility

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

Resources

NHGRI Sickle Cell Studies on ClinicalTrials.gov

 

Other Sickle Cell Studies on ClinicalTrials.gov

About Sickle Cell

Interviews and Articles

Contact Information

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.gov. Within a week, someone from our study team will contact you, answer any questions you may have about this project, and schedule an interview time.

Contact

Laura M. Koehly, Ph.D.
Laura M. Koehly, Ph.D.
  • Chief
  • Social and Behavioral Research Branch

Last updated: June 10, 2016