# Craniofacial microsomia: Accelerating Research and Education (CARE)

> **NIH NIH R01** · SEATTLE CHILDREN'S HOSPITAL · 2021 · $541,871

## Abstract

Project Summary
Craniofacial microsomia (CFM) is a complex congenital condition that affects approximately 1:3,500 to 1:5,600
live births. Clinical features associated with CFM include underdevelopment of the facial structures, most
commonly affecting the ear (e.g. microtia), and jaw (e.g. mandibular hypoplasia). Nearly half of individuals with
CFM also have extra-cranial malformations, such as heart, kidney, or spine anomalies. Individuals with CFM
have complex healthcare needs and often require a lifetime of staged and (ideally) coordinated evaluations
and interventions to optimize growth and nutrition, hearing, neurodevelopment, breathing, and minimize the
impact of extra-cranial malformations. Recent advances in techniques for hearing amplification, jaw
distraction, and ear reconstruction have the potential to improve aspects of health important to individuals with
CFM. However, we have large gaps in knowledge about holistic healthcare outcomes, burden of healthcare,
cost, and the psychologic needs of individuals with CFM and/or their caregivers. Individuals with CFM have
rarely been included in qualitative studies to explore their unique healthcare experiences. This study proposes
to establish an international community of individuals affected by CFM, healthcare providers, and advocacy
leaders to facilitate future research in CFM. Multi-perspective data pertaining to the psychological health and
healthcare experiences of individuals with CFM and their caregivers across the treatment pathway will be
collected. The study team proposes a mixed-methods multi-informant and international study. This
methodologically rigorous approach will be used to achieve the following goals: validate a psychological
conceptual framework for CFM through interviews with 160 individuals with CFM and/or their caregivers (Aim
1); identify predictors of psychological distress in an international population of 800 individuals affected by CFM
(Aim 2); evaluate the extent to which current healthcare provisions address the areas of psychological concern
identified in Aims 1 and 2 through interviews with over 60 healthcare professionals and patient advocates (Aim
3); and establish a registry for participants with CFM and/or their caregivers for future research (Aim 4). This
project will provide a comprehensive approach for assessing psychological health and healthcare experiences
of individuals with CFM and their caregivers. Future studies will focus on investigations of specific interventions
to optimize psychologic health in this vulnerable population.

## Key facts

- **NIH application ID:** 10149285
- **Project number:** 5R01DE029510-02
- **Recipient organization:** SEATTLE CHILDREN'S HOSPITAL
- **Principal Investigator:** Carrie Lyn Heike
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $541,871
- **Award type:** 5
- **Project period:** 2020-05-01 → 2025-02-28

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10149285

## Citation

> US National Institutes of Health, RePORTER application 10149285, Craniofacial microsomia: Accelerating Research and Education (CARE) (5R01DE029510-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10149285. Licensed CC0.

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