Palliative care and advance planning for children with rare diseases and their families
Official title: Palliative Care Needs of Children with Rare Diseases and their Families
Funded at Children's Research Institute · NIH-11267966 · Data updated 2026-11-12
This project offers a family-centered advance care planning program to help parents of young children with rare diseases address palliative care needs and make future medical decisions.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Research Institute NIH-funded |
| Lab location | 1 site (Washington, United States) |
| Project start | February 1, 2025 |
| Project end | January 31, 2030 |
| Funding year | 2026 |
| Award (this year) | $696,096 |
| NIH project number | 5R01HD117137-02 |
| Project ID | NIH-11267966 on NIH RePORTER |
Who could benefit from this research
✓Could help
Parents or primary caregivers of children with rare diseases—especially infants and young children who cannot participate in decision-making—are the intended participants.
✕Less likely to help
Families of older children who can participate directly in decisions, people without a rare pediatric condition, or those who do not want advance care planning may not benefit from this program.
What this research studies
If your child has a rare disease, your family may be invited to join a program adapted to help parents make future medical choices and get basic palliative support. The program uses a family-centered approach (FACE) and Respecting Choices Next Steps Pediatric ACP, and was shaped with input from families and the National Organization for Rare Disorders. Families will be randomly assigned to receive the adapted planning program with attention to basic palliative needs or to usual care, and trained staff will guide conversations and document care preferences. The study aims to learn what supports families need and whether this approach helps them feel more prepared and less anxious.
Why it matters
Potential benefit: If successful, the program could help families feel more prepared for tough medical decisions and improve alignment of care with family wishes.
How similar studies have gone: Previous family-centered advance care planning programs like FACE have shown promise in improving communication and preparedness in families of seriously ill children, but they have rarely been tested specifically in rare disease populations.
Where this research is happening
-
Children's Research Institute
Washington, United States Active
Researchers
- Principal investigator: Lyon, Maureen Ellen — Children's Research Institute
- Study coordinator: Lyon, Maureen Ellen
Related research
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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.