What will happen in the study?
Your participation in this research project initially will involve a structured questionnaire. During the interview you will be asked questions about your vascular lesion. The questions focus on past and current symptoms you have had related to the vascular lesion. We will also ask about past and current medical and surgical treatments that you have had.
In addition to the questionnaire, we request permission to contact the primary doctor managing the vascular lesion for additional information. The information we will request is limited to information about the vascular lesion. Specifically, we are interested in blood test results, imaging reports, pathology reports, and details of specific medical and surgical treatments administered.
Major questions in this field about response to therapies and long-term outcomes have been difficult to answer, since many patients are lost to follow-up (move away, change doctors, etc.). To improve our answers to these questions, we would like to be able to follow up with you yearly, with a short questionnaire (about 10-20 minutes) regarding the ongoing management of your vascular anomaly. This will continue until you choose to withdraw from the study or are lost to follow-up.
You may choose to participate in the initial questionnaire and gathering of data from your physician without choosing to be contacted every year. In addition, you may ask to be removed from the follow-up portion of this study at any point in the future.
The data collected from both the initial questionnaire and the annual follow-up will include lesion features, symptoms, laboratory values, outcome measures, and functionality scores. Data will be housed at Boston Children's Hospital. Your data is always available to the center that referred you to our study. For research, de-identified data (without your name, date of birth, etc.) may be shared with other institutions.