The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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FAP/HB (Hepatoblastoma Survey)

Sara J. Rhode, B.S.
Genetic Counseling Intern
University of South Carolina School of Medicine
Dept of Clinical Genetics & Molecular Medicine
Two Medical Park, Suite 103
Columbia, SC 29203
E Mail
Sara.Rhode@gmail.com

Dear FAP Group Members,

I am a graduate student in genetic counseling at the University of South Carolina School of Medicine and am conducting research on Familial Adenomatous Polyposis (FAP). The primary purpose of this study is to understand parental concerns and preferences towards screening for hepatoblastoma in children at risk for FAP. Hepatoblastoma is a rare liver tumor that is associated with a less than a 2% risk in children with FAP.

You may qualify if you or your child’s other parent has been diagnosed with FAP. If you are interested in participating, please complete a short survey to determine if you meet the criteria for this study at:

Survey Link External Website

When prompted, please enter the password: FAPc

Participation is completely confidential. Risks of this study include potential anxiety provoked by awareness of health consequences and possible loss of privacy confidentiality. Maximum precautions will be taken to ensure the safety of your personal contact information as well the anonymity of your survey responses. Your participation in this research is completely voluntary. If you do not wish to participate, simply disregard this message. If you have any questions, you may contact me or my faculty advisor at any time.