Craniofacial microsomia: Accelerating Research and Education (CARE)

项目总结/摘要 颅面矮小症（CFM）是一种复杂的先天性疾病，影响约1：3500活产。 与CFM相关的临床特征包括面部结构发育不全，最常见的是 影响耳朵（例如，小耳畸形），颌（例如，下颌发育不全），近一半的CFM患者 患有颅外畸形，如心脏、肾脏或脊柱异常。拉丁裔人的人数是 比非拉丁裔白色同龄人更可能患有CFM。人们对经济、社会、卫生和 受CFM影响的个人及其家庭的临床经验。对这些影响的了解更少 受影响的拉丁裔家庭更重要的是，拉丁美洲参与生物医学研究是 不成比例的低。虽然智能手机、二维码和短信在美国被广泛使用， 社区，在使用技术招募拉丁人进入生物医学领域方面存在数字鸿沟。 research.基于网络的资源不解决信息需求，文化和/或语言的拉丁美洲人 社区新的战略，从事和包括拉丁美洲人在基于网络的研究是必不可少的， 产生可推广的发现。我们的长期目标是利用我们的CFM疾病登记处来回答 广泛的以患者为导向的问题，改善受影响的个人的健康和福祉 CFM。在这个项目中，我们的目标是开发和评估聊天机器人作为一种新的招聘工具，以促进拉丁美洲 参与CFM注册。我们将开发一个以人为本的设计（HCD）聊天机器人， 按文化和语言定制的按需信息，以帮助注册。聊天机器人将包括3个 对话：非拉丁英语、拉丁英语和拉丁西班牙语。我们将完成以下目标：目标1 （发现）：描述在拉丁裔中招募到我们的CFM注册中心的障碍和促进因素（英语 和西班牙语为主）和非拉丁裔个人，目标2（设计）：采用迭代过程来测试和 修改采用基于SMS/文本的策略的聊天机器人，以增强我们的CFM注册表的招聘， 3个对话和目标3（评估）：在6个月内部署和评估招聘聊天机器人。我们 与最终用户的迭代、持续和深入的参与将包括40次与非Latinx、Latinx 英语和拉丁西班牙语的个人为每个目标（120面试总数）。这将确保我们的平台，流量 信息和时间，以及我们的HCD聊天机器人的其他结构组件将支持招聘 CFM登记册。使用社会和文化上适当的通信，我们的HCD聊天机器人将参与， 可用性和交互性。这项工作将增加有关HCD聊天机器人可以在多大程度上 增加CFM登记研究的参与度和入组率，以及其增强Latinx招募的潜力 和非拉丁裔个人更广泛地进入生物医学研究。

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.