A mobile app to improve genetic healthcare for infants
Official title: GenePAL: A Portable Approach to Longitudinal Genomic Healthcare for Infants
Funded at Boston Children's Hospital · NIH-11038576 · Data updated 2026-11-12
This study is testing a new mobile app called 'Nest' that helps families with infants who have genetic conditions by giving them personalized care plans and support to better manage their child's health.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | January 1, 2025 |
| Project end | December 31, 2027 |
| Funding year | 2025 |
| Award (this year) | $446,042 |
| NIH project number | 1R21HG014064-01 |
| Project ID | NIH-11038576 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are infants diagnosed with rare genetic diseases and their families.
✕Less likely to help
Patients who do not have genetic conditions or are older than 11 years may not benefit from this research.
What this research studies
This research focuses on developing a mobile application called 'Nest' that aims to enhance the management of genetic conditions in infants. By providing personalized healthcare plans, the app seeks to empower families to better understand their child's genetic diagnosis and navigate the necessary follow-up care. The study will utilize a mixed-methods approach to refine and evaluate the app's effectiveness in improving care coordination and access to specialized services. Families will be actively involved in the process to ensure the app meets their needs and addresses barriers to care.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes for infants with genetic conditions by facilitating timely and informed healthcare decisions.
How similar studies have gone: Previous research has shown success in using mobile applications for healthcare management, indicating potential for this novel approach.
Where this research is happening
-
Boston Children's Hospital
Boston, United States Active
Researchers
- Principal investigator: Wojcik, Monica Hsiung — Boston Children's Hospital
- Study coordinator: Wojcik, Monica Hsiung
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.