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Virtual Platforms for Genetics Evaluation in the Medically Underserved

医疗服务不足地区的遗传学评估虚拟平台

基本信息

批准号：
10559603
负责人：
Seema R Lalani
金额：
$ 30.2万
依托单位：
BAYLOR COLLEGE OF MEDICINE
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-02-01 至 2024-01-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10559603
关键词：
Acceleration Adopted Affect Area Caring Cessation of life Child Child Care Childhood Chronic Clinic Clinical Clinical Research Clinical Services Collaborations Communities Community Outreach Competence Congenital Abnormality Consultations Country Decision Making Diagnosis Diagnostic Diagnostic Services Disease Education Equity Evaluation Face Family Genetic Genetic Counseling Genetic Diseases Genetic Services Genomic medicine Genomics Goals Health Health Personnel Health Professional Health Sciences Health Services Accessibility Healthcare Hispanic Income Inequality Infrastructure Intelligence Intervention Latinx Life Life Expectancy Measures Medical Medical Genetics Medicine Mexican Mexico Minority Minority Enrollment Modeling Morbidity - disease rate Neurodegenerative Disorders Neurodevelopmental Problem Online Systems Outcome Pathway interactions Patient Care Patients Phase Physician Assistants Physicians Pilot Projects Population Poverty Provider Rare Diseases Recommendation Recording of previous events Registries Remote Consultation Resources Rural Service delivery model Services Site South Texas Surveys Survivors System Technology Test Result Testing Texas Time Training Underserved Population Uninsured United States Universities Vulnerable Populations access disparities child services clinical care clinical decision-making clinical diagnosis clinical practice college design diagnostic tool early childhood ethnic minority experience follow-up genetic disorder diagnosis genetic resource genetic testing genome sequencing health care availability health literacy improved literacy low socioeconomic status lower income families marginalization medical complication medically underserved medically underserved population minority communities multidisciplinary non-genetic novel pediatric patients personalized medicine population based prevent primary care practice primary endpoint public health priorities rapid diagnosis rare genetic disorder recruit research clinical testing research study rural area underserved area urban area virtual virtual platform web services webinar

项目摘要

Project Summary Disparate access to genetic services among ethnic minorities and those with low socioeconomic status has marginalized the most vulnerable populations, particularly children with rare diseases. About one-third of children with rare diseases die before they reach their fifth birthday. There are significant inequalities in genetic services that children currently receive along the Texas-Mexican border in the Rio Grande Valley (RGV) where many of the citizens are underserved and uninsured. While genomic information to improve health outcomes is being integrated in clinical practice elsewhere in the country, significant barriers exist in this impoverished and medically underresourced region of Texas that prevent delivery of essential genetics evaluation. Prioritizing equity and inclusion in health care, we propose to implement one of the first academic web-based virtual clinics called Consultagene in the underresourced regions of Texas to provide clinical evaluation of pediatric rare diseases through front-line clinics. A multidisciplinary team at University of Texas Health Rio Grande Valley clinic and Baylor College of Medicine will clinically evaluate 100 ‘hard to diagnose’ children with rare diseases, with goals of accelerating access to care and intervention. Genome sequencing (GS) will be completed as a first-line test to deliver rapid diagnoses and reduce the time to diagnosis for clinical decision-making. We will also build genomic competency of front-line healthcare providers through use of facial recognition technology and education to expedite referral of pediatric patients with suspected rare diseases. If successfully modeled at the primary partner site (UG3 phase), the strategy will be implemented at Texas Tech University Health Sciences Center (TTUHSC) in El Paso, along the US-Mexico border (UH3 phase). Our ultimate goal is to advance genetics evaluation of pediatric rare diseases in remote marginalized areas of Texas for improving health outcomes and providing avenues for targeted intervention.

项目总结