Palliative Care Needs of Children With Rare Diseases and Their Families

NCT06938542•Children's National Research Institute

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Conditions

Trisomy 13 SyndromeArthrogryposis Congenita Multiplex With Intestinal AtresiaAsparagine Synthetase Deficiency+16 more

Interventions

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

Locations

United States

Locations (1)

Children's National Hospital

Washington D.C., District of Columbia, United States

Key Dates

Start Date

October 2, 2025

Primary Completion Date

February 2, 2029

Completion Date

August 2, 2029

Last Updated

January 28, 2026

Sponsors

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)

Detailed Description

Full Eligibility Criteria

Data Source & Attribution

This clinical trial information is sourced from ClinicalTrials.gov, a service of the U.S. National Institutes of Health.

ClinicalTrials.gov last update: January 28, 2026Data synced to Clareo: April 27, 2026

Modifications: This data has been reformatted for display purposes. Eligibility criteria have been parsed into inclusion/exclusion sections. Location data has been geocoded to enable distance-based search. For the authoritative and most current information, please visit ClinicalTrials.gov.

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