Condition or Therapy: Craniofacial microsomia
Category: Craniofacial

What is the goal of this study?

We want to learn more about the health care experience of children with craniofacial microsomia (and their caregivers). This information will help us define what craniofacial microsomia (CFM) studies we conduct in the future.

Who can join the study?

This study might be a good fit if you:

  • Have a child with CFM, hemifacial microsomia (HFM), microtia without a specific genetic syndrome, Goldenhar or oculo-auriculo-vertebral spectrum (OAVS).
  • Have CFM, HFM, microtia without a specific genetic syndrome, Goldenhar or OAVS, and are 21 years or older.

What happens in the study?

If you choose to take part in the study, you would take an anonymous online survey. The survey will ask general information about your child’s medical condition, experiences with their care, and options about future clinical research. No personal health information (PHI) will be collected.

Take the survey.

Who can I contact for information or to enroll?

Please email Laura Stueckle.

Study Location(s): Seattle Children's Hospital main campus
Principal Investigator: Dr. Daniela Luquetti