The Hemophilia Treatment Center at New York Presbyterian Hospital-Weill Cornell Medical Center in New York City is conducting an important project to better determine “why individuals with bleeding disorders may or may not tell other people about their condition.”
It is hoped that this study will provide valuable information about disclosure that will be enlightening and useful both to patients in the bleeding disorders community and to the providers who care for them. Previous studies about disclosure among people with bleeding disorders have been specific to HIV disclosure, but not how people with bleeding disorders generally feel about sharing information about their bleeding disorders.
The online survey is designed for adults with hemophilia, ages 18 and up. The survey, which takes about 15 minutes to complete, asks basic questions relevant to bleeding disorder type, severity (if known), time of first diagnosis and complications. It also asks about disclosure scenarios involving relatives, friends, school mates, work associates and other possible members of the community. Participants will be given space to share additional comments at the end. The survey is both confidential and anonymous. The results will be statistically analyzed and examined against all participants’ responses collectively.
Share your experiences on disclosure by answering this survey today!
