Clinical trial
Palliative Care Needs of Children With Rare Diseases and Their Families
NCT06938542 is registered in ClinicalTrials.gov with Children's National Research Institute as lead sponsor.
Search trials, sites, companies and investigators, and follow each one to the others. Individual plan, $249/seat/mo. Card required.
Registry record
As filed in ClinicalTrials.gov.
- Title
- Palliative Care Needs of Children With Rare Diseases and Their Families
- Lead sponsor
- Children's National Research Institute
- Phase
- Not applicable
- Overall status
- Enrolling by invitation
- Start date
- October 2, 2025
- Completion date
- August 2, 2029
- Enrollment
- 480 (estimated)
- Sites
- 1
Conditions
As the registry lists them; a condition with its own page is linked.
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