Current Research Studies

Cleft Lip and Palate – Infants with Orofacial Clefts: Development and Validation of an Observer-Reported Outcomes Instrument (ICOO)

Condition or Therapy:

Cleft lip and palate 



What is the goal of this study?

Our goal of this study is to develop a questionnaire that can be used to improve care for children who have a cleft of the lip or a cleft of the lip and palate.

Who can join the study?

This study is for parents who are 18 years old or older and have a child that is:

  • Less than 3 years old 
  • Diagnosed with a cleft lip or a cleft lip and palate

What will happen if my child takes part in this study?

This study is done in two phases. In Phase I, parents will be asked to take part in an interview, an online survey, or a focus group to tell us about their observations of their child’s health and well-being. The purpose of Phase I is to gather information that will help us develop the questionnaire. In Phase II, we will ask parents to complete the questionnaire.

Who can I contact for more information?

Email the research coordinator.

Study Location(s):

Seattle Children's Hospital campus 

Principal Investigator:

Dr. Carrie Heike

Learn more about Dr. Heike's research.