New program aims to ease the burden for families facing rare childhood diseases

NCT ID NCT06938542

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

Summary

This study is testing a support program called FACE-Rare for families caring for children with serious rare diseases. The program aims to help families plan for future medical decisions and address their own support needs. Researchers want to see if this improves the family's quality of life and affects the child's use of healthcare services like hospital visits.

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Contacts and locations

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Locations

Children's National Hospital

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

Conditions

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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