New program aims to ease burden on families of kids with rare diseases

NCT ID NCT06938542

ENROLLING_BY_INVITATION Symptom relief Sponsor: Children's National Research Institute Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tests a program called FACE-Rare, designed to support family caregivers of children with rare, life-limiting diseases. The program includes three sessions to help families prepare for future medical decisions and improve their quality of life. Researchers will compare this program to usual care in 480 families, tracking outcomes like caregiver stress, spiritual well-being, and the child's healthcare use over 12 months.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance: Family-centered pediatric palliative care (FACE-Rare intervention)
What this could lead to: If successful, this program could provide a model to better support families caring for children with rare diseases, improving their quality of life and helping them prepare for difficult medical decisions.
What could go wrong: This is an early-stage behavioral study, not testing a drug or cure. Results may not apply to all families, and improvements in quality of life may be modest or hard to measure.

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Conditions

The condition(s) this trial relates to.

anxiety disorder CHARGE syndrome chromosome 17p13.1 deletion syndrome Cockayne syndrome congenital diaphragmatic hernia congenital microcephaly - severe encephalopathy - progressive cerebral atrophy syndrome Depression early-infantile DEE factor VII deficiency FOXG1 disorder hemophilia A infantile epileptic-dyskinetic encephalopathy KBG syndrome mitochondrial DNA depletion syndrome neurodegeneration with brain iron accumulation 5 Noonan syndrome Rare Diseases severe hemophilia A short bowel syndrome trisomy 13 Trisomy 13 Syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

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

Contacts and locations

Locations

Children's National Hospital

Washington D.C., District of Columbia, 20010, United States

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