Quality of Life Survey for Individuals with Marfan Syndrome
Ileana Ratiu, Ph.D., CCC-SLP, and her research team members are conducting a research study on the quality of life in individuals with Marfan syndrome. This research study has been reviewed and approved by the Midwestern University Internal Review Board.
You can participate by completing this survey, which should take no longer than 20 minutes. This survey asks you about various aspects of your daily life and will help us determine what challenges individuals with Marfan syndrome might experience in their daily lives.
There is no cost to participate in this survey. You must be at least 18 years or older to participate. Your participation in this study is voluntary. You may withdraw from the study at any point, for any reason. All possible safeguards to maintain your privacy and the confidentiality of your answers will be undertaken by all members of the research team. The researcher, Ileana Ratiu, Ph.D., CCC-SLP, and her research team members will have access to the information that you provide. Your name will not be used in any published reports about this study. Your name will not be attached to survey responses. An alphanumeric coding system will be used to keep the data confidential.
If you have any questions concerning the survey, please contact Ileana Ratiu, PhD, CCC-SLP, at firstname.lastname@example.org or 623-537-6328. Or you can contact the Office of Research and Sponsored Programs or the Institutional Review Board (623-572-3728).
Take the survey here: https://www.surveymonkey.com/r/W8VDPVB