Crerand Lab's Current Research

Cleft palate with or without cleft lip (CP±L) is among the most common congenital conditions in the United States, occurring in about one in 800 births. Children with CP±L need care from different specialties. Care can last through adulthood to improve speech, facial appearance and physical and psychosocial health.

Cleft care has changed a lot over time. There is a need to study results (outcomes) in larger, newer, and more diverse groups of children. 

Since CP±L can negatively affect people over their lifespan, it is helpful to identify early risk factors for poor health and outcomes. This helps to prevent psychosocial problems in people with cleft and their caregivers. 

CORNET 

The Cleft Outcomes Registry/Research Network (CORNET) is currently the largest study of cleft care in the United States. It follows a group of children over time. It focuses on surgery and speech results in a group (cohort) of infants born with cleft palate with or without cleft lip (CP±L). 

The Health And Psychosocial Outcomes in Young Children With Cleft Palate (HAPY) study will enhance what we learn in CORNET to help us better understand how several factors impact health and psychosocial outcomes for children and their parents. 

HAPY 

A research project was developed to advance patient care and health outcomes for children with CP±L. The project looks at both early signs and long-term outcomes for these children. 

What we learn can be used to:

  • Identify factors that are related to poor and optimal health and well-being in young children and their caregivers.
  • Change factors that affect outcomes. 
  • Develop better ways of helping and supporting children and their caregivers.
Study 1 – HAPY Cross-Sectional Study

We want to look at how medical and demographic factors relate to health and well-being of children ages 2-5 years who are enrolled in CORNET. We will also examine caregiver well-being.

English or Spanish-speaking parents/legal guardians of children between ages 2 years, 0 months, to 5 years, 11 months, born with a cleft palate (with or without cleft lip) who are enrolled in the CORNET study can take part in this study. They will be asked to complete an online survey that will take about 30 minutes. Parents can also complete the survey using pen and paper. The survey and a postage-paid return envelope will be mailed to you. 

For more information, please contact us at HAPYStudy@NationwideChildrens.org or (614) 722-2762.

Study 2 – HAPY Longitudinal Survey Study (Examining Patients Over Time)

We will study changes in child health, well-being and quality of life from infancy (before cleft palate repair) up to approximately 36 months of age. We will also look at changes in caregiver well-being over time. English or Spanish-speaking parents/legal guardians of children between ages 1 month to 16 months, born with a cleft palate (with or without cleft lip) who are enrolled in the CORNET study before palate repair are eligible to take part. Parents/legal guardians will be asked to complete surveys at three time points: 1) when they enroll in the study; 2) when their child is ~24 months old; and 3) when their child is ~36 months old. Surveys will take about 30-45 minutes to complete and can be done online or using paper and pencil surveys.

Some parents will be asked to complete interviews about their child’s cleft and related healthcare at the start of the study and when their child is ~36 months old.

Other parents with children less than 6 months old when they join the survey study can take part in the Feeding Video Study which will look at feeding infants with cleft palate and the effects on health and parent well-being.

For more information, please contact us at HAPYStudy@NationwideChildrens.org or (614) 722-2762.

HAPY Team

Nationwide Children’s Hospital
Other Participating Sites and Collaborators

Phoenix Children’s Hospital

  • Erica Weidler Baimbridge, M.Ed., MA - Site Principal Investigator 
  • Thomas Sitzman, MD - HAPY Co-Investigator CORNET Executive Committee Member
  • Yousef Ghazzawi, MBBCh - Project Coordinator
  • Judi Peters, ADN – Project Coordinator

The Children’s Hospital of Philadelphia 

  • Leanne Magee, PhD, Site Principal Investigator
  • Zach Valenzuela, B.S., Project Coordinator

Children’s Hospital of Los Angeles

  • Alessia Johns, PhD, Site Principal Investigator

Seattle Children’s Hospital 

  • Carrie Heike, MD, MS, Site Principal Investigator
  • Anna Meehan, AuD, CCC-A, EMT, Project Coordinator

University of Iowa Stead Family Children’s Hospital 

  • Amy Conrad, PhD, Site Principal Investigator

University of Utah

  • Kathy Chapman, PhD, Co-Investigator, CORNET Study Principal Investigator
  • Sarah Pollard, MSPH, Med, CORNET Research Manager

University of West England

  • Nicola Stock, PhD, Co-Investigator

Shriners Hospital for Children, Chicago 

  • Kathy Kapp-Simon, PhD, Consultant
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