Gynecologic and reproductive characteristics of individuals diagnosed with Marfan Sydnrome and Loeys-Dietz Syndrome
Information sheet
You are being asked to participate in a research survey which aims to characterize the reproductive health of individuals diagnosed with Marfan Syndrome and Loeys-Dietz Syndrome
Who is conducting this research study?
This research survey was developed by a group of clinicians and specialists in the field of Obstetrics and Gynecology at the Cleveland Clinic Foundation.
Who is being invited to participate in this research study?
You are eligible for this research study if you are biologically female, you are over the age of 18, and you have been formally diagnosed with either Marfan Syndrome or Loeys-Dietz Syndrome.
How do I participate in this research study?
To participate, you will be asked to complete an online research survey. This research survey should take no more than 20 minutes to complete. The research survey includes questions characterizing your menstrual cycle, reproductive history, and previous diagnoses with conditions of the reproductive system, along with screening questions for certain conditions of the reproductive system. Some questions included in the research survey may involve sensitive or personal information, and you may choose not to answer all questions. If you cannot set aside a full 20 minutes to complete the research survey, an option is available to save your work and return at a later time using a unique code.
Your participation in this research study is voluntary. You will not experience any consequences if you choose not to participate in this research study, or if you decide to discontinue the research survey after you have started it. Your current or future medical care at the Cleveland Clinic will not be impacted should you choose not to participate in or complete the research survey.
What are the benefits of participating in this research study?
You will not receive any direct benefit for participating in this research study. However, your answers will help us better understand the unique characteristics of the reproductive health of patients with Marfan Syndrome and Loeys-Dietz Syndrome.
What are the risks of participating in this research study?
There are no anticipated risks to participating in this research study greater than the risks you face in everyday life. You may experience some discomfort when reflecting on your diagnosis or conditions, but this should be no more than when you complete questionnaires at the doctor's office.
How will my research survey answers be used?
We hope to publish the results of this research study in order to help healthcare providers who care for patients diagnosed with Marfan Syndrome or Loeys-Dietz Syndrome be aware of the unique characteristics of their reproductive health. If you wish to keep a record of your research survey answers, there is an option available at the end of the research survey to download a PDF of your responses.
Will my answers be confidential?
This research survey is completely anonymous, and we ask that you do not put any identifying information such as email addresses or telephone numbers in the answers to the research survey questions. Once submitted, your research survey response will be saved to an online database that only the investigators can access. Should we publish the results of this research study, there will be no information included that links your identity to the research survey results.
If you have any questions about this research study, please contact Dr. Elliott Richards via phone at (216) 839-3150 or email at [email protected].org, or you may contact our research study personnel, Cydni Akesson, via email at [email protected] If you have any questions about your rights as a research participant, please contact the Cleveland Clinic Institutional Review Board at 1-800-223-2273 ext. 42924.
Dr. Elliott Richards, MD, PhD
[email protected]
Please read the following statements carefully to ensure you agree to the conditions of this research study before acknowledging your decision to participate:
1. I have read the above description of the research study and have had adequate time to consider and ask further questions to research study personnel.
2. I understand that my participation is voluntary, and that I may discontinue the research survey at any point before submitting my responses.
3. I understand that my responses are anonymous and confidential, and that no information will be published that links my identity to my responses.
4. I am willing to participate in this research study.
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