NCT06938542Enrolling by invitation
Palliative Care Needs of Children With Rare Diseases and Their Families
Source: ClinicalTrials.gov · Last updated 28 Jan 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Enrolling by invitation
- Study type
- Interventional
- Enrollment
- 480 (estimated)
- First submitted
- 8 Apr 2025
- Start date
- 2 Oct 2025
- Primary completion date
- 2 Feb 2029
- Lead sponsor
- Children's National Research Institute
- Diseases
- Epilepsy, Chronic kidney disease, Haemophilia
- NCT number
- NCT06938542
What you commit to
- Study type: Interventional
- Planned participants: 480
- From 2 Oct 2025 to the primary completion date, 2 Feb 2029
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.
Criteria the registry did not label
- 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.
Age in the registry: 12 months to 99 years · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Children's National Hospital Coordinator of this site? Confirm its status | Washington D.C. | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.