This research study has been reviewed and approved by the Midwestern University Internal Review Board.
We are conducting a research study on the quality of life among individuals with Marfan Syndrome. We invite you to participate by completing the following survey, which should take no longer than 20 minutes. This survey will ask 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. You must be at least 18 years old to participate in the survey. There is no cost to participate in this survey. You will be one of approximately 400 subjects asked to participate in this survey. If you would like to provide us with an e-mail address, we may contact you for possible future research studies. The results of this study will help us understand the quality of life in individuals with Marfan Syndrome. There are no foreseeable immediate or long-term risks or discomforts to your participation. Responses to this survey will help us understand what difficulties, if any, individuals with Marfan Syndrome experience daily.
Although there are no apparent immediate personal benefits to participating in this study (no payment, etc.), it is important to note that issues related to Marfan Syndrome are of considerable interest to the health services community. Your responses will help shed light on an important topic and may impact future topics of research to help individuals with Marfan Syndrome and related disorders.
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 have provided. 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. Ileana Ratiu, Ph.D., CCC-SLP will retain your research records, including information from your medical records, for at least six years or until the study is completed, whichever is longer. However, your personal health information cannot be used for additional research without additional approval from either you or a review committee.
You may refuse to participate or may discontinue your participation AT ANY time, without penalty or loss of benefits, or change in your present or future care. The investigator also has the right to withdraw you from the study at any time. If you withdraw from this study, the information already collected may continue to be used, to maintain the integrity of the study.
If you have additional questions during the course of this study about the research or your rights as a research subject you may address them to the Office of Research and Sponsored Programs or the Institutional Review Board (623/572-3728). In the event of a research-related injury or if any other problems arise, you may contact (Dr. Ileana Ratiu 623/537-6328).
I HAVE READ THE INFORMATION PROVIDED ABOVE (OR HAVE HAD IT READ TO ME) AND HAD MY QUESTIONS ANSWERED TO MY SATISFACTION. I VOLUNTARILY AGREE TO PARTICIPATE IN THIS STUDY.
CLICKING "NEXT" BELOW WILL BE CONSIDERED YOUR CONSENT TO PARTICIPATE IN THE RESEARCH STUDY.