Join the PHACE Registry
Timeline - Ongoing

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The PHACE Registry is in its 17th year! 

 

We know a lot about PHACE in infants and young children, but not so much about what happens in older individuals. With the help of the PHACE Syndrome Community, investigators were able to study more than 100 individuals aged 10 or older with PHACE. Some of the key findings included:

• A very high percentage of participants were satisfied with the appearance of the areas of skin which had previously hemangiomas present during infancy

• Headaches were very common (nearly three-quarters of those surveyed)

• Stroke was a very rare complication, occurring in less than 2%

 

Stay tuned! More information from this study will be coming out in 2024. This study wouldn’t have been possible without families and patients being willing to participate in this research. It is a good example of why we hope you will consider enrolling in the PHACE Registry.

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There is so much more to learn about PHACE and YOU can help!

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Did you know? PHACE community participation in the PHACE registry has been critical to developing care guidelines for individuals with PHACE!

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This registry is for people diagnosed with PHACE,  LUMBAR and other, hemangioma-related syndromes, and performs a genetic analysis. Please note: you do NOT have to provide DNA samples to join the registry. The researchers may ask, but you may decline. Every piece of information helps the research team learn more about PHACE.

 

The PHACE registry goals for 2024 are to:

1. Develop tools to predict the risk of worsening blood vessel changes in the brain with the goal to find treatments to prevent complications in the future

2. Understand what genes or environmental factors cause the developmental heart, brain and blood vessel changes in PHACE

 

Doctors tell us this is one of the most important thing families can do to help support research and find the answers we are all seeking. 

 

Learn more about the PHACE Registry or scan the QR code.

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