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.
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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.
Study identification
- NCT ID
- NCT06938542
- Recruitment status
- Enrolling by invitation
- Study type
- Interventional
- Phase
- Not applicable
- Enrollment
- 480 participants
Conditions and interventions
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
- 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
- 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 Sep 4, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT06938542 live on ClinicalTrials.gov.