Cleft Lip and Palate Quality of Life: The CLEFT-Q Study

An International Study to Develop a Patient-Reported Outcome Measure for Cleft Lip and/or Palate Patients: The CLEFT-Q Factors Impacting Quality of Life Among Young Adults with Cleft Lip and Palate

Protocol Description

Through this program, researchers will use input from people with cleft lip and/or cleft palate to develop a patient-reported outcome tool – a questionnaire that will help clinicians measure and understand what young patients with these conditions think and feel about their appearance before and after surgical treatment for their condition.

Eligibility Criteria

Children and young adults of both genders, ages 6 to 29 years, who are being surgically treated for their cleft lip or cleft palate, are eligible to participate.
Males and Females: Ages 6 to 29


Participants will be asked a series of questions before and after surgery related to their feelings about how they look and feel about their facial features, speech, breathing, and other facets of their appearance. The questionnaire may be administered multiple times over the course of patients’ treatment for their conditions. Additionally, researchers will collect medical history information about participants.
Visits: None beyond normal clinical care for the patient’s condition
Duration: Not applicable

Status: Open to Enrollment

Source(s) of Support

Canadian Institutes of Health Research

Primary Investigator

Jesse Goldstein, MD

Contact Information

For more information about the study or enrollment, please contact:
Research Specialist Jennifer Fantuzzo, BS