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TrialConditionsStatusPhaseUpdatedMore infoNCT ID
Palliative Care Needs of Children With Rare Diseases and Their FamiliesAbnormalities, Multiple, Bone Diseases, Developmental, CHARGE syndrome, Cardiovascular Abnormalities, Cockayne syndrome, Congenital Abnormalities, Congenital, Hereditary, and Neonatal Diseases and Abnormalities, Craniofacial Abnormalities, DNA repair disease, Deaf-Blind Disorders, Deafness, Digestive System Diseases, Disease Attributes, Dwarfism, Ear Diseases, Eye Diseases, Hereditary, FOXG1 disorder, Hemic and Lymphatic Diseases, Hernia, Hernia, Diaphragmatic, Internal Hernia, KBG syndrome, Musculoskeletal Abnormalities, Neurobehavioral Manifestations, Neurologic Manifestations, Noonan syndrome, Nutritional and Metabolic Diseases, Pathologic Processes, Pathological Conditions, Anatomical, Pathological Conditions, Signs and Symptoms, Postoperative Complications, Rare Diseases, Sensation Disorders, Signs and Symptoms, Skin and Connective Tissue Diseases, anxiety disorder, blindness (disorder), blood coagulation disease, bone disorder, cardiovascular disorder, chromosomal disorder, coagulation protein disease, coloboma, congenital diaphragmatic hernia, congenital heart disease, congenital microcephaly - severe encephalopathy - progressive cerebral atrophy syndrome, connective tissue disorder, depressive disorder, digestive system disorder, eye disorder, factor VII deficiency, hearing disorder, hearing loss disorder, heart disorder, hematologic disorder, hemophilia A, hemorrhagic disease, hereditary disease, infantile epileptic-dyskinetic encephalopathy, inherited blood coagulation disorder, inherited neurodegenerative disorder, intellectual disability, intestinal disorder, malabsorption syndrome, metabolic disease, musculoskeletal system disorder, nervous system disorder, neurodegeneration with brain iron accumulation 5, neurodegenerative disease, otorhinolaryngologic disease, psychiatric disorder, severe hemophilia A, short bowel syndrome, trisomy 13, vision disorderEnrolling by invitationNot applicable2026-01-28NCT06938542