# VIGOR: Virtual Genome Center for Infant Health

> **NIH NIH R01** · BOSTON CHILDREN'S HOSPITAL · 2022 · $1,073,077

## Abstract

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.

## Key facts

- **NIH application ID:** 10494149
- **Project number:** 5R01HG011798-02
- **Recipient organization:** BOSTON CHILDREN'S HOSPITAL
- **Principal Investigator:** PANKAJ B AGRAWAL
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $1,073,077
- **Award type:** 5
- **Project period:** 2021-09-24 → 2026-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10494149

## Citation

> US National Institutes of Health, RePORTER application 10494149, VIGOR: Virtual Genome Center for Infant Health (5R01HG011798-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10494149. Licensed CC0.

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