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.
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.
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.
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
NHGRI Sickle Cell Studies on ClinicalTrials.gov
- Sharing Family Health Information about Sickle Cell Disease and Sickle Cell Trait
See details about our protocol in its larger study context on ClinicalTrials.gov (NCT01633021)
- INSIGHTS into Microbiome and Environmental Contributions to Sickle Cell Disease and Leg Ulcers
On ClinicalTrials.gov page NCT02156102
Other Sickle Cell Studies on ClinicalTrials.gov
- NIH Sickle Cell Studies: From National Heart Lung and Blood Institute (NHLBI), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institute of Biomedical Imaging and Bioengineering (NIBIB) and on ClinicalTrials.gov.
- NHLBI: Natural History of Sickle Cell Disease and Other Hemolytic Disorders (NCT00081523)
- NHLBI: Genetics and Pain Severity in Sickle Cell Disease (NCT01441141)
- NHLBI: Collection and Storage of Umbilical Cord Stem Cells for Treatment of Sickle Cell Disease (NCT00012545)
- NHLBI/NIDDK: Secondary Pulmonary Hypertension in Adults With Sickle Cell Anemia (NCT00011648)
- NHLBI/NIDDK: Evaluation of Sickle Cell Liver Disease (NCT01950429)
- NHLBI: Assessment of Algorithm-Based Hydroxyurea Dosing on Fetal Hemoglobin Response, Acute Complications, and Organ Function in People With Sickle Cell Disease (NCT02225132)
- NHLBI/NIAID/NIBIB: Blood Flow and Pain Crises in People With Sickle Cell Disease (NCT01568710)
- Additional Sickle Cell Studies: ClinicalTrials.Gov
About Sickle Cell
- CDC: Sickle Cell Disease and Sickle Cell Trait Information
- National Heart, Lung, and Blood Institute (NHLBI): Explore Sickle Cell Disease
- National Library of Medicine, Genetics Home Reference: Sickle Cell Disease
- Sickle Cell Information Center
- NHGRI: Learning About Sickle Cell Disease
- CDC Sickle Cell Disease National Resource Directory
Interviews and Articles
- NHGRI Interview with Laura Koehly, Ph.D., and Vence Bonham, J.D.
- Our healthcare system abandons adult sickle cell patients: The Washington Post, March 21st 2016
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.
Last updated: June 10, 2016