Darcy Huismann is leading a research study titled, Dynamics and Functioning through a Cardiac Arrhythmia Diagnosis. Research studies involve only people who choose to participate. You are being asked to participate in this study because you are (1) over 18 years old living with an inherited arrhythmia (SADS) condition that was diagnosed between the ages of 3-12 years old, and have at least one sibling without a SADS condition; (2) you are the parent or primary caregiver of a child that was diagnosed between the ages of 3-12 years old, and have at least one healthy child; OR (3) you are the sibling of someone that was diagnosed between the ages of 3-12 years old, and do not share the condition. The purpose of this study is to better understand the impact such a diagnosis has on the entire family unit as well as how a family history of the condition and treatment decisions influence any affects.

It will take approximately 40 minutes to complete the survey. There is no benefit or risk to you for participating in this study. Taking part in this study will not cost you anything. You may stop your participation at any time without negative consequences. You will not be identifiable by name or description in any reports or publications about this study.

You may choose not to take the survey. Your opportunity to be a part of the SADS community will not be affected in any way by your choice whether to participate in the study or not. If you choose to participate, your consent is implied by completion of the survey.

If you have questions about this study, please contact the Principal Investigator, Darcy Huismann at Darcy-Huismann@ouhsc.edu. For questions about your rights as a research subject, contact the OUHSC Director of the Human Research Participant Protection Program at 405-271-2045.

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