Helping families of infants with rare genetic conditions get virtual support
Improving accessibility of virtual interventions for families of infants with neurogenetic conditions - Resubmission
This project helps families with infants newly diagnosed with rare genetic conditions like Angelman Syndrome get early support and intervention through a virtual program.
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 ID | NIH-11137042 on NIH RePORTER |
What this research studies
When infants are diagnosed with rare genetic conditions, families often struggle to find early support and specialized care. This project introduces the PIXI program, a virtual intervention designed to help caregivers adapt to their infant's diagnosis and learn ways to support their child's development during the first year of life. Because PIXI is delivered remotely, families can receive crucial information and intervention from the comfort of their own homes. The project aims to understand what helps or hinders families from participating and to test how well PIXI works for families who face challenges in accessing care.
Who could benefit from this research
Good fit: Ideal candidates are families with infants (0-11 months old) who have recently received a diagnosis of a rare neurogenetic condition, such as Angelman Syndrome.
Not a fit: Families with older children or those who do not have reliable internet access or devices for virtual participation may not directly benefit from this specific intervention.
Why it matters
Potential benefit: If successful, this program could provide much-needed early intervention and support, potentially improving developmental outcomes for infants with rare neurogenetic conditions and enhancing family well-being.
How similar studies have performed: While systematic early intervention for rare neurogenetic conditions is severely lacking, this telehealth-based, parent-mediated approach builds on general principles of early childhood intervention.
Where this research is happening
Research Triangle Park, United States
- 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 below.