NCT06938542 - Palliative Care Needs of Children With Rare Diseases and Their Families | Biotech Hunter

Enrollment

480

Participants

Timeline

Start Date

February 2, 2026

Primary Completion Date

February 2, 2029

Study Completion Date

January 31, 2030

Conditions

Trisomy 13 SyndromeArthrogryposis Congenita Multiplex With Intestinal AtresiaAsparagine Synthetase DeficiencyCHARGE SyndromeEarly Infantile Epileptic EncephalopathyFOXG1 SyndromeKBG SyndromeNoonan SyndromeSevere Hemophilia AShort Bowel SyndromeBeta-Propeller Protein-Associated NeurodegenerationBrain Injury of Prematurity With Periventricular LeukomalaciaChromosome 17p13.3 Microdeletion SyndromeChromosome 1q43-1q44 DeletionCockayne SyndromeCongenital Diaphragmatic HerniaEnd-Stage Renal Disease With Cloacal AnomalyMitochondrial Depletion DisorderSevere Factor VII Deficiency

Interventions

BEHAVIORAL

Family Centered pediatric palliative care for family caregivers of children with rare diseases.

Child with rare disease who is unable to participate in medical decision making/family caregiver/support person triads will be randomized at a 1:1 ratio to one of two study arms, either the 3 session FACE-Rare intervention or the enhanced Treatment as Usual. Assessments will be completed at baseline, 3, 6 and 12 month outcomes.

Trial Locations (1)

20010

Children's National Hospital, Washington D.C.