​The PHACE Syndrome Community (PSC) is excited to announce a new initiative to advance patient-centered research on PHACE and LUMBAR syndromes: the formation of a Research Advisory Board (RAB). This is a meaningful opportunity for USA based adult patients and family members to have a direct and lasting impact on the research priorities and study designs that shape our understanding of these rare conditions.

The PSC Research Advisory Board is a volunteer board, and will serve as a bridge between the patient and family community and the physician-scientist investigators who conduct research on PHACE and LUMBAR syndromes. 

 

How does the Research Advisory Board work with researchers?

• Researchers will submit a document with a description of a research study that the RAB will review. 

• Studies will be presented in layman's terms for review; it is not required to have a scientific background to be considered for the RAB. 

• RAB members will provide feedback, ensuring that the patient perspective is embedded in the scientific process from the outset. 

• Throughout the study, the RAB will offer ongoing input as researchers conduct their studies.

 

Terms and Board Composition

• The RAB will consist of 7-10 advisory members

• The members will consist of parents and patients of various ages, and diagnoses.

• The term length is 2 years, with an option to renew. 

 

Roles & Responsibilities

Members of the Research Advisory Board are expected to:

• Attend virtual advisory board meetings held every 3–6 months (typically daytime meetings).

• Serve for the length of the 2 year term.

• Review assigned research study description and goals prior to each meeting (minimum of 2 studies per review cycle).

• Provide constructive feedback on study aims, goals, design, and patient-relevance to physician-scientist investigators.

• Represent the interests and perspectives of the broader PHACE and LUMBAR syndrome patient and family community.

• Engage respectfully and collaboratively with research investigators and fellow board members.

• Maintain confidentiality of unpublished research materials shared for review purposes.

• Special projects to support the PHACE syndrome community may be assigned to the RAB.

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Application are now closed.  

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Questions about the RAB? Email the PSC!

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