Virtual genetics support for sick newborns
VIGOR: Virtual Genome Center for Infant Health
This project will offer remote genetic testing and expert support to sick newborns in community NICUs and their families to help find diagnoses faster and guide care.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project ID | NIH-11170408 on NIH RePORTER |
What this research studies
If my newborn is ill in a community NICU, this program would connect our care team and family with a virtual genetics center that can arrange and interpret exome sequencing. The center plans to enroll 250 eligible newborns from community NICUs around the United States and follow families for six months. Families and clinicians will receive remote consultations to help understand genetic findings and consider personalized treatment or management. The aim is to bring specialist genomic expertise to hospitals that lack local genetics resources so more babies can get timely answers.
Who could benefit from this research
Good fit: Ideal candidates are sick newborns admitted to participating community NICUs who are suspected of having a genetic condition and whose families can consent to exome sequencing and six months of follow-up.
Not a fit: Healthy newborns or infants whose problems are clearly non-genetic are unlikely to benefit from this program.
Why it matters
Potential benefit: If successful, families could receive faster genetic diagnoses and more personalized care without needing to travel to specialized centers.
How similar studies have performed: Related efforts like BabySeq and the Undiagnosed Disease Network have shown genomic testing can speed diagnosis for infants, though virtual implementation across community NICUs is relatively new.
Where this research is happening
Boston, United States
- Boston Children's Hospital — Boston, United States (Active)
Researchers
- Principal investigator: Yu, Timothy Wei-Wen — Boston Children's Hospital
- Study coordinator: Yu, Timothy Wei-Wen
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.