Marfan Syndrome Survey A Note On Privacy This survey is anonymous. The record kept of your survey responses does not contain any identifying information about you. Please do not write in any identifying information. Please do not write your identifying information on the return envelope. There is no way of matching your identity with responses in this survey. Instructions: 1. Please answer all of the questions to the best of your ability. 2. Some of the questions require fill-in-the-blank answers; when doing so, please write in your answer legibly. 3. For other questions you will need to check-mark the answer(s). 4. If you are under 18 years of age, please read the consent form carefully and ask permission from your parent or guardian to participate. 5. Please answer the questions by yourself. 6. Please do not skip any questions that apply to you. 7. Please do not write your name or provide any other identifying information on the questionnaire Little information is available in scientific literature on contraception practices and recommendations for men or women affected by the Marfan syndrome (MFS). There is also little information on association of Marfan syndrome and pelvic connective tissue disorders. You have been selected for participation in this survey because you have told the National Marfan Foundation that you, or a close relative of yours, have MFS. We would like to ask your kind participation, whether a man or a woman, in this survey on pregnancy and contraception issues in MFS. There is no right or wrong answers; we are merely interested in what you know and what medical professionals have told you. Your answers will elucidate the need for and inspire future investigations in issues related to MFS. These questions and the multiple choice answers are not meant to suggest medical advice. Please do not write your name or provide any other identifying information on the questionnaire. Please choose ALL answers that apply. The survey is in 3 parts and takes less than 14 minutes on average to answer all questions. Part 3, connective tissue disorders (of pelvic organs), applies only to females. On behalf of National Marfan Foundation and Stanford University we thank you for your participation. Once we have completed the project and analyzed the results we will be pleased to share the results with you. The results are expected to be available by early 2009 and will be posted on Vesta Research Company web site. To request a copy of the results, please send a separate e-mail to: MFS Survey M. Mark Taslimi, M.D. Marfan.Stanford@VestaGate.com Sincerely, Contraception, Pregnancy, and Connective Tissue Disorder in Marfan Syndrome Research Group at Stanford University David Liang, MD; Mary Jacobson, MD; Bertha Chen, MD; Kasra Navabi, MD; Kennith Hunter, DPA; M Mark Taslimi, MD. There are 53 questions in this survey. [Exit and Clear Survey]

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