# Craniofacial microsomia: Accelerating Research and Education (CARE)

> **NIH NIH R01** · SEATTLE CHILDREN'S HOSPITAL · 2022 · $62,771

## Abstract

PROJECT SUMMARY / ABSTRACT
Craniofacial microsomia (CFM) is complex congenital condition that affects approximately 1:3500 live births.
Clinical features associated with CFM include underdevelopment of the facial structures, most commonly
affecting the ear (e.g., microtia), jaw (e.g., mandibular hypoplasia), and nearly half of individuals with CFM
have extra-cranial malformations, such as heart, kidney, or spine anomalies. Latinx individuals are twice as
likely to have CFM than their non-Latinx white peers. Little is known about the economic, social, health, and
clinical experiences of individuals affected by CFM and their families. Even less is known about these impacts
on affected Latinx families. Compounding this is that Latinx participation in biomedical research is
disproportionately low. Though smartphones, QR codes and texting are widely used in the US Latinx
community, there is a digital divide in the use of technology to recruit Latinx individuals into biomedical
research. Web-based resources do not address the informational needs, culture and/or language of the Latinx
community. New strategies that engage and include Latinx individuals in web-based research are essential to
produce findings that are generalizable. Our long-term goal is to leverage our CFM disease registry to answer
a wide range of patient-oriented questions that improve the health and well-being of individuals affected by
CFM. In this project, we aim to develop and evaluate a chatbot as a novel recruitment tool to facilitate Latinx
participation in the CFM registry. We will develop a human-centered design (HCD) chatbot that provides
culturally and linguistically tailored, on-demand information to aid enrollment. The chatbot will include 3
dialogues: non-Latinx English, Latinx English, and Latinx Spanish. We will complete the following aims: Aim 1
(Discover): Characterize barriers and facilitators to recruitment into our CFM registry among Latinx (English
and Spanish-dominant) and non-Latinx individuals, Aim 2 (Design): Employ an iterative process to test and
modify a chatbot employing SMS/texting-based strategies to enhance recruitment into our CFM registry for our
3 dialogues, and Aim 3 (Evaluate): Deploy and evaluate the recruitment chatbot over a 6-month period. Our
iterative, ongoing, and deep involvement with end-users will include 40 interviews with non-Latinx, Latinx
English, and Latinx Spanish individuals for each aim (120 interviews total). This will ensure our platform, flow
and timing of information, and other structural components of our HCD chatbot will support recruitment for the
CFM registry. Using socially and culturally appropriate communications, our HCD chatbot will be engaging,
usable and interactive. This work will add new knowledge about the extent to which a HCD chatbot can
increase engagement and enrollment into the CFM registry, and its potential to enhance recruitment of Latinx
and non-Latinx individuals into biomedical research more broadly.

## Key facts

- **NIH application ID:** 10534253
- **Project number:** 3R01DE029510-03S2
- **Recipient organization:** SEATTLE CHILDREN'S HOSPITAL
- **Principal Investigator:** Carrie Lyn Heike
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $62,771
- **Award type:** 3
- **Project period:** 2020-05-01 → 2024-02-29

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10534253

## Citation

> US National Institutes of Health, RePORTER application 10534253, Craniofacial microsomia: Accelerating Research and Education (CARE) (3R01DE029510-03S2). Retrieved via AI Analytics 2026-06-12 from https://api.ai-analytics.org/grant/nih/10534253. Licensed CC0.

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