Palliative Care Needs of Children With Rare Diseases and Their Families
Public ClinicalTrials.gov record NCT06938542. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Study identification
- NCT ID
- NCT06938542
- Recruitment status
- Enrolling by invitation
- Study type
- Interventional
- Phase
- Not applicable
- Lead sponsor
- Children's National Research Institute
- Other
- Enrollment
- 480 participants
Conditions and interventions
Conditions
- Arthrogryposis Congenita Multiplex With Intestinal Atresia
- Asparagine Synthetase Deficiency
- Beta-Propeller Protein-Associated Neurodegeneration
- Brain Injury of Prematurity With Periventricular Leukomalacia
- CHARGE Syndrome
- Chromosome 17p13.3 Microdeletion Syndrome
- Chromosome 1q43-1q44 Deletion
- Cockayne Syndrome
- Congenital Diaphragmatic Hernia
- Early Infantile Epileptic Encephalopathy
- End-Stage Renal Disease With Cloacal Anomaly
- FOXG1 Syndrome
- KBG Syndrome
- Mitochondrial Depletion Disorder
- Noonan Syndrome
- Severe Factor VII Deficiency
- Severe Hemophilia A
- Short Bowel Syndrome
- Trisomy 13 Syndrome
Interventions
- Family Centered pediatric palliative care for family caregivers of children with rare diseases. Behavioral
Behavioral
Eligibility (public fields only)
- Age range
- 12 Months to 99 Years
- Sex
- All
- Healthy volunteers
- Accepts healthy volunteers
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Oct 1, 2025
- Primary completion
- Feb 1, 2029
- Completion
- Aug 1, 2029
- Last update posted
- Jan 27, 2026
2025 – 2029
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Children's National Hospital | Washington D.C. | District of Columbia | 20010 | — |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT06938542, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Jan 27, 2026 · Synced May 20, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT06938542 live on ClinicalTrials.gov.