Assessing Barriers to Care in Individuals Affected with Marfan Syndrome Survey
1.
Health Care Costs and Marfan Syndrome: Care Effects and Community Feelings – Questionnaire
Thank you very much for your interest in completing this survey. This questionnaire will assess the health care costs associated with Marfan syndrome, the insurance coverage available for these costs, and the community’s reactions to these costs. We hope this information will help to create new and better policies around health care costs for chronic conditions.
This questionnaire is estimated to take approximately 25 minutes. Your completion of this questionnaire serves as your consent to participate in the study. All information provided during the survey is confidential and for this reason, we ask that you do not include any identifiable information, like your name, in your responses.
As a requirement to participate in this study you must be 18 years or older and have a medical diagnosis of Marfan syndrome or have a child with a medical diagnosis of Marfan syndrome. If you do not fit one or more of these characteristics, any provided information will not be included in the study.
Participation in this study is free and completely voluntary. Should you wish to not participate in the study you can opt out at any time during the questionnaire. Anticipated risk to participants in this study involves any emotional discomfort a participant may feel when discussing personal finances.
You will not receive payment for participation in this study, but the potential benefits include improved health care policy and adding to our understanding of Marfan syndrome.
You may receive multiple notifications regarding this research study through multiple organizations or publications. We ask that you only complete this survey ONCE.
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. Should you have any questions regarding the questionnaire or the research study please feel free to contact either study coordinator listed.
Thank you again for your participation!
Jilliane Miller, jilliane@bu.edu
Maureen Flynn, (617) 638-5908, gc4dna@bu.edu