Making virtual support easier for families with infants who have rare genetic conditions
Official title: Improving accessibility of virtual interventions for families of infants with neurogenetic conditions - Resubmission
Funded at Research Triangle Institute · NIH-10809075 · Data updated 2026-11-12
This study is testing a new online program called PIXI to help families with infants who have rare neurogenetic conditions by giving them tools and support to boost their child's development during the important first year, especially focusing on making it easier for Black and Hispanic families to participate.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Research Triangle Institute NIH-funded |
| Lab location | 1 site (Research Triangle Park, United States) |
| Project start | July 11, 2024 |
| Project end | June 30, 2026 |
| Funding year | 2024 |
| Award (this year) | $244,190 |
| NIH project number | 1R21HD111933-01A1 |
| Project ID | NIH-10809075 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include families with infants diagnosed with rare neurogenetic conditions, particularly those from Black and Hispanic backgrounds.
✕Less likely to help
Patients who do not have infants with neurogenetic conditions or those who are not part of the targeted demographic may not benefit from this research.
What this research studies
This research focuses on developing a telehealth program called the Parent Infant Interac(X)tion Intervention (PIXI) to support families of infants diagnosed with rare neurogenetic conditions. The program aims to provide caregivers with the necessary tools and interventions to enhance their child's development during the crucial first year of life. By identifying barriers and facilitators to participation, particularly for Black and Hispanic families, the research seeks to ensure that these interventions are accessible and effective. Families will receive support and information from the comfort of their homes, making it easier to adapt to their child's diagnosis.
Why it matters
Potential benefit: If successful, this research could significantly improve developmental outcomes for infants with neurogenetic conditions and enhance the well-being of their families.
How similar studies have gone: Previous research has shown that telehealth interventions can be effective in supporting families with children who have developmental delays, suggesting a promising avenue for this approach.
Where this research is happening
-
Research Triangle Institute
Research Triangle Park, United States Active
Researchers
- Principal investigator: Wheeler, Anne Caroline — Research Triangle Institute
- Study coordinator: Wheeler, Anne Caroline
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.