Palliative Care Needs of Children With Rare Diseases and Their Families

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Record identity and dates

Source

ClinicalTrials.gov

Source record ID

NCT06938542

Title field or adapter rule

protocolSection.identificationModule.officialTitle

Ingested At

2026-04-25T22:28:32.535988+00:00

Published At

2026-01-28T00:00:00+00:00

Record Updated At

2026-01-28

Timestamp Basis

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Date limitation

source retrieval time was not retained by the feed adapter

Fields recorded by this source

protocolSection.conditionsModule.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"]

protocolSection.statusModule.lastUpdatePostDateStruct.date

"2026-01-28"

protocolSection.identificationModule.nctId

"NCT06938542"

protocolSection.identificationModule.officialTitle

"Palliative Care Needs of Children With Rare Diseases and Their Families"

protocolSection.statusModule.overallStatus

"ENROLLING_BY_INVITATION"

protocolSection.designModule.phases

["NA"]

protocolSection.statusModule.resultsFirstPostDateStruct.date

""

Study condition terms

• Trisomy 13 Syndrome (protocolSection.conditionsModule.conditions)
• Arthrogryposis Congenita Multiplex With Intestinal Atresia (protocolSection.conditionsModule.conditions)
• Asparagine Synthetase Deficiency (protocolSection.conditionsModule.conditions)
• CHARGE Syndrome (protocolSection.conditionsModule.conditions)
• Early Infantile Epileptic Encephalopathy (protocolSection.conditionsModule.conditions)
• FOXG1 Syndrome (protocolSection.conditionsModule.conditions)
• KBG Syndrome (protocolSection.conditionsModule.conditions)
• Noonan Syndrome (protocolSection.conditionsModule.conditions)
• Severe Hemophilia A (protocolSection.conditionsModule.conditions)
• Short Bowel Syndrome (protocolSection.conditionsModule.conditions)
• Beta-Propeller Protein-Associated Neurodegeneration (protocolSection.conditionsModule.conditions)
• Brain Injury of Prematurity With Periventricular Leukomalacia (protocolSection.conditionsModule.conditions)
• Chromosome 17p13.3 Microdeletion Syndrome (protocolSection.conditionsModule.conditions)
• Chromosome 1q43-1q44 Deletion (protocolSection.conditionsModule.conditions)
• Cockayne Syndrome (protocolSection.conditionsModule.conditions)
• Congenital Diaphragmatic Hernia (protocolSection.conditionsModule.conditions)
• End-Stage Renal Disease With Cloacal Anomaly (protocolSection.conditionsModule.conditions)
• Mitochondrial Depletion Disorder (protocolSection.conditionsModule.conditions)
• Severe Factor VII Deficiency (protocolSection.conditionsModule.conditions)

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