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GET INVOLVED

GET INVOLVED WITH RESEARCH

To learn about ongoing research studies and/or to participate, please click any of the following links:

Pediatric Access to Electronic Health Information: Stories from Adolescents and Parents

Symposium Editor: Bryan A. Sisk, MD

Narrative Inquiry in Bioethics will publish a collection of personal stories from parents and adolescents about their experience accessing their electronic health information (EHI) online. 

The 21st Century Cures Act requires healthcare systems to give adolescents and parents access to their EHI. This EHI includes clinical notes, imaging and laboratory results, and scheduled appointments. The goal of providing this EHI access is to support transparency and openness. This new access could result in harmful consequences, though, like disclosing an adolescent’s confidential information to their parents. Adolescents could also see upsetting results online before their doctor or parents can talk to them, like a cancer diagnosis. Parents might feel frustrated because some hospitals block parents from accessing the adolescent’s EHI. 

We want true, personal stories in a form that is interesting and easy to read. You can write your story with your parent or adolescent or by yourself. 

 

Learn more about how to write your story and submit it for collection. 

Vascular Birthmark Counseling Study Survey

Are you the parent of a child born with a vascular birthmark? If so, we would love to hear from you.
It does not matter how old your child is now. As long as you remember the time of diagnosis, we want to know about it! If you yourself have a vascular birthmark, please consider forwarding this to a parent!

This is a Boston University Institutional Review Board-approved online survey study about the patient/family experience when a vascular birthmark condition is first diagnosed. We want to know what went well during your experience and what could have been better, including your feelings about providers' bedside manner. You can help future parents of children with vascular birthmarks of any kind. It should only take a few minutes and is completely anonymous.

You may open the survey in your web browser by clicking here

Electronic
Vascular Birthmark
Join the PHACE Registry
Timeline - Ongoing

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.
 

What are the goals of the registry?

  1. Learn about hemangiomas, PHACE, and LUMBAR and how they affect individuals over time

  2. Understand the genetic cause of hemangiomas, PHACE and LUMBAR to determine why they occur, and how to improve treatment.


Doctors tell us this 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

PHACE Regisry
Closed Studies
Adults
Seeking all patients ages 10 years and older for a new study on PHACE Syndrome!
CLOSED

Researchers at many academic medical centers in the United States, Canada, and Spain are doing a study on individuals age 10 years and older with PHACE Syndrome.

Why? We know very little about the evolution of PHACE over time.  By looking through medical records, interviewing participants, and using quality of life questionnaires, we hope to better understand the impact that PHACE Syndrome has as individuals with PHACE become teenagers and adults.  This study will help to better define their health status including whether certain medical issues develop or resolve over time.  Through it we may be able to better educate families and inform future patient care guidelines.

 

Seeking Photos to Help Improve Diagnostics

CLOSED

Seeking all parents with pictures! For this study, researchers at Indiana University, University of California, San Francisco, the Medical College of Wisconsin, and the Mayo Clinic are requesting that parents of children with hemangiomas and a diagnosis of PHACE syndrome fill out a questionnaire and send us a series of photographs of their child which demonstrates the early stages of the hemangioma. Ideally the photographs would show your child, including the area of the hemangioma, at or around birth, 1 week, 2 weeks, 3 weeks, 4 weeks, 8 weeks, and 12 weeks of age.

 

We believe that these photographs contain a great deal of useful information which can tell us much more than we currently know about the early signs of hemangiomas associated with PHACE Syndrome. We will be using these photographs to analyze early clues for hemangiomas at risk for PHACE Syndrome, and to hopefully help educate clinicians that will see infants very early in life so they can more accurately diagnosis and triage these infants.

Are you an adult (18+) who has been diagnosed with PHACE Syndrome?

CLOSED

Investigation of the natural history of PHACE syndrome with respect to adult patients. 

Sequencing of 30 PHACE tissue samples

CLOSED

Through the Kids First Data Resource Center, sequencing 30 PHACE tissue samples. This will be very important in trying to understand what causes PHACE.

 

Gabriella Miller Kids First X01 Grant

CLOSED

Testing of whole genome sequencing (WGS). This is a very sophisticated test to look for small changes in the DNA that might cause PHACE and LUMBAR.

PHACES Foundation of Canada Grant

CLOSED

10 and over
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