Family-centered palliative care support for families of children with rare diseases
Tests a family-centered palliative care program for caregivers of children with rare diseases.
Plain-language title generated from the registry record
Registry title: Palliative Care Needs of Children With Rare Diseases and Their Families
Key facts
- Where
- Washington D.C., United StatesSee the site
Where in United States
- Children's National HospitalWashington D.C., United StatesNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Children's National Research Institute
- Trial code
- NCT06938542
- Record updated
- 28 January 2026
- Original description
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.Read full original descriptionShow less
Palliative Care Needs of Children With Rare Diseases and Their Families
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.
Exclusion: Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.
Child inclusion criteria:; ≥1.0 years and <18.0 years at enrollment; Unable to participate in end-of-life care decision-making; Has a rare disease as operationally defined by NIH's Genetic and Rare Diseases Information Center (GARD); Not under a Do Not Resuscitate Order or Allow a Natural Death Order; Not in the Intensive Care Unit; Family caregiver inclusion criteria:; > 18.0 years at enrollment; Child's family caregiver/legal guardian; Not known to be developmentally delayed; Support person inclusion criteria:; > 18.0 years at enrollment; Chosen by family caregiver; Not known to be developmentally delayed.