Advocacy & Research
Current Research in the Field
ClinicalTrials.gov provides searchable information on Clinical Trials and Human Research Studies. Click here for the Trial List for a search on “Congenital Heart Disease.”
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Research Study Notice:
Condition being studied: An infant is diagnosed with PHACE syndrome when he or she has a large hemangioma in combination with one or more other abnormalities. The hemangioma is usually on the face or neck. “PHACE” refers to a group of abnormal medical findings. When these occur together, the diagnosis of PHACE syndrome is made.
“PHACE” stands for these symptoms:
Posterior fossa- These are brain malformations. They are usually present at birth. They do not form after the baby is born.
Hemangioma- The hemangioma is a strawberry birthmark and usually covers a large area on the skin of the head or neck. The word "segmental" is sometimes used to describe the hemangiomas.
Arterial lesions- The abnormalities of the blood vessels in the neck or head.
Cardiac defects/aortic coarctation- These are abnormalities of the heart or the blood vessels attached to the heart.
Eye abnormalities.
Criteria used to determine eligibility: Subjects with a facial hemangioma plus one additional feature may enroll in this study.
Benefits: You will not personally benefit from participating in this study. But by serving as a subject, you may contribute new information which may benefit patients in the future.
Burdens: If the results of these studies of your genetic makeup were to be released through a breach of confidentiality, this could affect your ability to get insurance or to get or keep a job. Blood drawing will cause some pain. Blood drawing carries a small risk of bleeding, bruising or infection at the puncture site. Some of the questions asked for this study may seem very personal. You may find some questions embarrassing. There will be no payment for enrolling in this study.
Time commitment: About 15 minutes for the blood draw and 15 minutes to complete the surveys. The blood draw can be done a local laboratory.
Location research being conducted:
Oregon Health & Science University
Clinical Investigator:
Dawn Siegel, MD
Assistant Professor Dermatology and Pediatrics
Oregon Health & Science University
Mail Code: CH16D
3303 SW Bond Ave.
Portland, OR 97239
Office: (503) 346-0029
siegeld@ohsu.edu
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An estimated 1,000,000 adult Americans have congenital heart defects (CHD), yet less than 10% are receiving the recommended care. How do we find those missing adults? It would help to know how they became lost to care and what could bring them back. Click here to see the results from the recent Survey Monkey survey that was posted on ACHA's website at the end of May 2007.
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The Adult Congenital Heart Association's (ACHA) purpose, when listing current research studies seeking volunteers, is solely to inform adults with congenital heart disease of the opportunities which exist. ACHA does not support, or otherwise endorse, any particular study. Adults with congenital heart disease interested in participating in a study should contact the specific research center directly. The responsibility for benefits and risks of the study are assumed totally by the researchers and properly informed test volunteers and not by the Adult Congenital Heart Association.