Primary Outcome Measures:
- Establish a DNA and tissue bank. [ Time Frame: 5 years ] [ Designated as safety issue: No ]
- Determine candidate genes for PHACE syndrome using a genome-wide approach. [ Time Frame: 10 years ] [ Designated as safety issue: No ]
Blood (4 ml) for lymphocyte cell lines and DNA and tissue collection from tissue that would otherwise be discarded after surgery.
If you and your child agree to participate in this study, the following will happen:
- The principal investigator at MCW, or her appointed representative, will review the study protocol and consent form with you and answer any questions- this can be done over the phone.
- If you choose to participate, the investigator will obtain informed consent for study participation, consent to obtain medical records, and a small amount of logistical information such as address and phone number.
- Subjects and parents will have a blood draw which can be done a local laboratory.
- If the subject undergoes surgery for another reason and there is tissue which would otherwise be discarded, we may ask to receive this sample for research purposes.
- We will request completion of surveys about the individual's medical history as it relates to this condition.
- The purpose of this study is to promote the understanding of the inheritance of hemangiomas associated with brain, eye and heart anomalies. The DNA obtained from participants are stored in a DNA repository and genetic data bank for current and future research projects related to their genetic disorders. The DNA specimens will be used to map disease-related genes. The principal investigator uses her discretion to decide which investigators will have access to this resource. The analysis of the specimens will vary depending on the investigator and his/her specific protocol.