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.

NCT Number	NCT06938542
Lead Sponsor	Children's National Research Institute Collaborators: Akron Children's Hospital, Stanford University, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Conditions	Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, FOXG1 Syndrome, KBG Syndrome, Noonan Syndrome +11 more
Enrollment	480 participants
Start Date	2025-10-02
Primary Completion	2029-02-02 (estimated)
Study Completion	2029-08-02 (estimated)
Updated on ClinicalTrials.gov	2026-01-28