You are being asked to participate in a project looking at 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. This study is about what information family members share and with whom. We would like to learn how talking about family risk information is related to personal relationships in families. Because of our interest in family relationships, you will be asked some personal questions, not just medical questions. There are no right or wrong answers to the questions we will be asking. All of the information that you share will be kept confidential, meaning no one outside of our research team will have access to your comments, and the results of the surveys will be reported in such a way that no individual will be able to be identified.
You will be asked to participate in an online survey and telephone interview that will take about 45 minutes to one hour, each. 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. 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.
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.
There will be no cost to you for your participation in this study. After completing the assessment, you will receive a $25 gift voucher for each part of the study (that is, gift vouchers totaling $50 for completing both the survey and the interview) as compensation in appreciation for your time and willingness to take part in the study.
Yes. Confidentiality will be kept within the research study. 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.
Yes. You are not required to participate in this study. You can ask questions or stop at any time, even if you have already consented to participate.
This study should be explained to you before you start participating so you can decide if you want to be involved. All of your questions about the study will be answered before you consent (agree) to participate, but also after - once you have started your involvement in the project. The study's Principal Investigator (Dr. Laura Koehly) and the research staff are available to answer any questions you may have regarding the study procedures and activities. At any time, if you have any questions regarding this research study, you may contact the study team by phone (1-866-585-7192, ext.2) or email (SickleCellFamilyStudy@mail.nih.gov).
Last Updated: June 10, 2016