权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

VIGOR: Virtual Genome Center for Infant Health

VIGOR：婴儿健康虚拟基因组中心

基本信息

批准号：
10661761
负责人：
PANKAJ B AGRAWAL
金额：
$ 105.17万
依托单位：
BOSTON CHILDREN'S HOSPITAL
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-09-24 至 2026-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10661761
关键词：
Address All of Us Research Program Caring Clinical Communication Communities Complex Consultations Data Data Analyses Diagnosis Diagnostic Disease Disparity Disparity population Early Diagnosis Education Eligibility Determination Enrollment Equity Ethnic Origin Evaluation Face Family Funding Genetic Genetic Diseases Genome Genomic medicine Genomics Goals Health system Hospitals Immunologic Deficiency Syndromes Infant Health Infrastructure Institutionalization Insurance Coverage Intervention Knowledge Language Low Income Population Low income Medical Medicine Mental Depression Mental Health Metabolic Diseases Minority Groups Modeling Muscle hypotonia Neonatal Intensive Care Units Newborn Infant Outcome Patient Care Patients Penetration Physicians Population Heterogeneity Probability Provider Race Recommendation Reporting Research Research Personnel Resources Seizures Signs and Symptoms Specialized Center Stress Target Populations Techniques Testing Therapeutic Transportation Underrepresented Minority United States National Institutes of Health Work access disparities age group biomedical referral center care seeking clinically actionable community center community setting congenital anomaly disparity gap ethnic minority ethnic minority population exome sequencing experience family support genetic testing health care disparity health equity implementation evaluation implementation outcomes improved innovation insight novel outcome disparities personalized medicine racial minority racial minority population response satisfaction social disparities virtual

项目摘要

PROJECT SUMMARY Genomic medicine has rapidly advanced in the past decade enabling earlier diagnosis and personalized treatment. However, only a few highly specialized centers in the US have the resources to take advantage of these advances in patient care. This has created a large health equity gap whereby patients cared for in typical community settings, often low-income and/or representing racial/ethnic minorities, do not receive equitable medical care. Another barrier to the wider utilization of genomic medicine is the poor dissemination of knowledge among clinicians, especially in community settings. A wide gap exists in the implementation of genomic medicine from diagnosis to personalized therapies, a field experiencing huge advances but still subject to wide disparities in accessibility. Our proposal aims to develop and test the implementation of a strategy to break down these barriers to genomic medicine, aligned with RFA-HG-20-036. Our target population is sick newborns. We propose a novel center, VIrtual GenOme CenteR (VIGOR), building upon our past and ongoing research as investigators for the NIH-funded Babyseq study (U19HD077671), Undiagnosed Disease Network (U01HG007690), and Center for Mendelian Genomics (UM1HG008900). VIGOR will be a center that can remotely support clinicians and families working in community NICUs. In AIM 1, we will establish the VIGOR center, and enroll and follow 250 eligible newborns and their families for 6 months within 4 community NICUs in the Northeast that serve diverse populations. In AIM 2, we will facilitate exome sequencing and create and return timely, comprehensive interpretive reports to families and physicians that: (1) relay diagnostic findings, (2) recommend clinical actions, (3) offer reanalysis of data for those with negative or inconclusive findings; and (4) provide additional research opportunities. In AIM 3, we will comprehensively assess implementation outcomes. Among neonatologists and within NICUs, we will examine 1) Appropriateness; 2) Feasibility; 3) Penetration; and 4) Equity (by race/ethnicity, insurance status, and primary language) and 5) Satisfaction of VIGOR use; among families, we will examine 1) Satisfaction; 2) Adverse mental health (stress and depression) and 3) Newborn clinical outcomes. This study will provide rigorous evaluation of implementing a virtual genome center into community clinical settings without highly specialized resources, thereby offering generalizable insights as to how best to implement genomic medicine at scale and for other age groups. Our intervention has great potential to address disparities in genomic medicine among low-income and URM populations and will enhance capacity for providers and health systems to utilize highly specialized genomic techniques in their communities.

项目总结