Health Care Costs and Marfan Syndrome: Care Effects and Community Feelings

Welcome! Thank you very much for you interest in the health care costs associated with Marfan syndrome and your willingness to participate in this questionnaire. This questionnaire will assess the costs associated with Marfan syndrome and impressions of the community about these costs. The results of this survey would be used to create information on these issues.

If you are:
18 years or older
English-speaking
AND
Have a medical diagnosis of Marfan syndrome
OR
Have a child with a medical diagnosis of Marfan syndrome

Please click on the link below to learn more about the study and have the opportunity to participate by completing the questionnaire. The questionnaire takes about 25 minutes to complete.

This survey is completely voluntary and can be stopped at any time. All responses are anonymous and will be kept strictly confidential. Should you have any questions or concerns about the survey or your participation please contact Jilliane Miller at jilliane@bu.edu or Maureen Flynn (617) 638-5908, gc4dna@bu.edu

You may learn more about your rights as a research participant by calling the office of the Institutional Review Board of Boston University Medical Center at (617) 638-7202.