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Family & Medical History for Registry Participants
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A major component of participation in the TOF Genetics Registry is the collection of family and medical histories. This typically takes approximately 30 minutes to complete and is usually collected by the genetic counselor who coordinates the Registry. We understand that this may include sensitive information and therefore ask participants to let the interviewer know if certain questions make them uncomfortable or if they prefer to omit answers to specific questions. The interview can be stopped at anytime at the request of the participant. The information that is collected as part of the interview is kept in the strictest confidence and is only shared with appropriate Registry staff as necessary.
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If you have time to prepare in advance, it helps ensure the accuracy of the information that is documented on the family tree. The genetic counselor typically constructs a three-generation pedigree, starting with the generation of the affected individual and working back. Therefore, the genetic counselor will ask questions about the approximate age and general health of siblings, parents, aunts, uncles, cousins, grandparents and their siblings. It is particularly important to know about any other individuals in the family who may have heart issues, including the specifics of the diagnosis and any treatments.
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Generally it is helpful to speak with relatives about the family history, as individuals in older generations often know more about the health status of distant individuals. In addition to questions about the general health of family members, the genetic counselor will also ask questions about stillbirths, miscarriages, learning issues, mental retardation, psychiatric issues, and pregnancy histories. In order to respect the privacy of individual family members, the names of relatives are not typically recorded on the family tree. Again, information that is collected as part of the interview is not put in the medical record - it is kept in a separated research file in a secure location.
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