Understanding the palliative care needs of children with rare diseases and their families
Palliative Care Needs of Children with Rare Diseases and their Families
This study is all about helping families with children who have rare diseases make tough medical decisions by creating a supportive plan that prepares them for future care options.
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 ID | NIH-11027250 on NIH RePORTER |
What this research studies
This research focuses on the unique challenges faced by families of children with rare diseases, particularly in making complex medical decisions. It aims to develop and test an advance care planning intervention tailored to these families, helping them prepare for future medical care choices. The study will involve consultations with families and stakeholders to ensure that their basic palliative care needs are addressed before implementing the intervention. By gathering data on these needs, the research seeks to improve support for families navigating difficult healthcare situations.
Who could benefit from this research
Good fit: Ideal candidates for this research are families with children aged 0-11 who have been diagnosed with rare diseases.
Not a fit: Patients who do not have rare diseases or are older than 11 years may not receive benefit from this research.
Why it matters
Potential benefit: If successful, this research could provide families with better tools and support for making informed medical decisions for their children with rare diseases.
How similar studies have performed: While there is limited research specifically addressing the palliative care needs of children with rare diseases, similar approaches in pediatric advance care planning have shown promise in other contexts.
Where this research is happening
Washington, United States
- Children's Research Institute — Washington, United States (Active)
Researchers
- Principal investigator: Lyon, Maureen Ellen — Children's Research Institute
- Study coordinator: Lyon, Maureen Ellen
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.