# Palliative Care Needs of Children With Rare Diseases and Their Families

> **NCT06938542** · NA · ENROLLING_BY_INVITATION · sponsor: **Children's National Research Institute** · enrollment: 480 (estimated)

## Conditions studied

- Trisomy 13 Syndrome
- Arthrogryposis Congenita Multiplex With Intestinal Atresia
- Asparagine Synthetase Deficiency
- CHARGE Syndrome
- Early Infantile Epileptic Encephalopathy
- FOXG1 Syndrome
- KBG Syndrome
- Noonan Syndrome
- Severe Hemophilia A
- Short Bowel Syndrome
- Beta-Propeller Protein-Associated Neurodegeneration
- Brain Injury of Prematurity With Periventricular Leukomalacia
- Chromosome 17p13.3 Microdeletion Syndrome
- Chromosome 1q43-1q44 Deletion
- Cockayne Syndrome
- Congenital Diaphragmatic Hernia
- End-Stage Renal Disease With Cloacal Anomaly
- Mitochondrial Depletion Disorder
- Severe Factor VII Deficiency

## Interventions

- **BEHAVIORAL:** Family Centered pediatric palliative care for family caregivers of children with rare diseases.

## Key facts

- **NCT ID:** NCT06938542
- **Lead sponsor:** Children's National Research Institute
- **Sponsor class:** OTHER
- **Phase:** NA
- **Study type:** INTERVENTIONAL
- **Status:** ENROLLING_BY_INVITATION
- **Start date:** 2025-10-02
- **Primary completion:** 2029-02-02
- **Final completion:** 2029-08-02
- **Target enrollment:** 480 (ESTIMATED)
- **Last updated:** 2026-01-28

## Collaborators

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## Primary source

ClinicalTrials.gov registry: https://clinicaltrials.gov/study/NCT06938542

## Citation

> US National Library of Medicine, ClinicalTrials.gov registration NCT06938542, "Palliative Care Needs of Children With Rare Diseases and Their Families". Retrieved via AI Analytics 2026-06-02 from https://api.ai-analytics.org/clinical/NCT06938542. Licensed CC0.

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