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Methods and Challenges in a Cohort Study of Infants and Toddlers With Craniofacial Microsomia: The Clock Study

Daniela V Luquetti1,2,3, Matthew L Speltz1,2,3, Erin R Wallace1

  • 11 Seattle Children's Research Institute, Seattle, WA, USA.

The Cleft Palate-Craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association
|January 10, 2019
PubMed

Insights

The CLOCK study followed infants with craniofacial microsomia (CFM) and controls to assess neurobehavioral outcomes. This research details the cohort

Area of Science:

  • Pediatric neurodevelopment
  • Craniofacial anomalies
  • Longitudinal cohort studies

Background:

  • Craniofacial microsomia (CFM) is a complex condition requiring comprehensive outcome assessment.
  • Longitudinal data is crucial for understanding developmental trajectories in children with CFM.

Purpose of the Study:

  • To describe the Craniofacial microsomia: Longitudinal Outcomes in Children pre-Kindergarten (CLOCK) study cohort.
  • To detail the data collection methods for characterizing CFM and its neurobehavioral outcomes.
  • To present the demographic and clinical characteristics of the CLOCK study participants.

Main Methods:

  • Recruited infants with CFM and unaffected controls (ages 12-24 months) from 5 sites.
  • Followed participants to ages 36-48 months.
  • Collected phenotypic, neurodevelopmental, facial expression, and medical history data across three time points.

Main Results:

  • The cohort comprises 108 cases and 84 controls, predominantly white and Hispanic.
  • Most cases exhibited microtia (95%) and mandibular hypoplasia (59%).
  • Cases received significant clinical care, including craniofacial clinic visits (59%) and surgeries (28%).

Conclusions:

  • The CLOCK study provides a robust dataset for investigating CFM outcomes.
  • This large, diverse cohort addresses challenges in characterizing CFM's phenotypic and neurodevelopmental impact.
Abstract

Keywords:
cohortcraniofacial microsomiahemifacial microsomiamethodsoculoauriculovertebral spectrum

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