Status:
NOT_YET_RECRUITING
Palliative Care Needs of Children With Rare Diseases and Their Families
Lead Sponsor:
Children's National Research Institute
Collaborating Sponsors:
Akron Children's Hospital
Stanford University
Conditions:
Trisomy 13 Syndrome
Arthrogryposis Congenita Multiplex With Intestinal Atresia
Eligibility:
All Genders
12-99 years
Phase:
NA
Brief Summary
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 t...
Detailed Description
Pediatric patients with rare diseases experience high mortality with 30% not living to see their 5th birthday. Families are likely to be asked to make complex medical decisions for their child. Pediat...
Eligibility Criteria
Inclusion
- 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.
- Exclusion Criteria:
- Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.
Exclusion
Key Trial Info
Start Date :
February 2 2026
Trial Type :
INTERVENTIONAL
Allocation :
ESTIMATED
End Date :
January 31 2030
Estimated Enrollment :
480 Patients enrolled
Trial Details
Trial ID
NCT06938542
Start Date
February 2 2026
End Date
January 31 2030
Last Update
April 22 2025
Active Locations (1)
Enter a location and click search to find clinical trials sorted by distance.
1
Children's National Hospital
Washington D.C., District of Columbia, United States, 20010