ADULTS WITH MARFAN SYNDROME

AND RELATED CONDITIONS

HARVARD RESEARCHERS NEED YOUR HELP

We are a group of doctors at Beth Israel Deaconess Medical Center who would like to understand the bowel and stomach issues that might affect patients with inherited connective tissue disorders. In order to do this, we have put together a survey of pertinent questions. We hope that if we are able to define some of the problems, doctors will be better able to treat these problems. Results from the survey will be published and shared.

We are hoping that you will be able to fill out this survey, which takes about 25 minutes. There is no need to do it in one setting. If you have a spouse or partner with whom you live and who does not have the disorder, it would be helpful if that person could also fill out the survey. If this is something that your significant other and you would like to do, you will receive a randomly generated number. Please send the number to him or her via email. This would allow us to compare the answers between people with the disorder and people without who are living in the same households. Your partner does not need to fill out the survey and you do not have to send the link to the survey if you do not wish to do so.

Please direct any questions you may have to marfansurvey@gmail.com.