A mobile app to improve genetic healthcare for infants
GenePAL: A Portable Approach to Longitudinal Genomic Healthcare for Infants
['FUNDING_R21'] · BOSTON CHILDREN'S HOSPITAL · NIH-11038576
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
| Phase | ['FUNDING_R21'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | BOSTON CHILDREN'S HOSPITAL (nih funded) |
| Locations | 1 site (BOSTON, UNITED STATES) |
| Trial ID | NIH-11038576 on ClinicalTrials.gov |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research are infants diagnosed with rare genetic diseases and their families.
Not a fit: Patients who do not have genetic conditions or are older than 11 years may not benefit from this research.
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 performed: Previous research has shown success in using mobile applications for healthcare management, indicating potential for this novel approach.
Where this research is happening
BOSTON, UNITED STATES
- 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 below.