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Enrolling by invitation Not applicable Interventional Accepts healthy volunteers

Palliative Care Needs of Children With Rare Diseases and Their Families

NCT06938542
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
Interventions
Family Centered pediatric palliative care for family caregivers of children with rare diseases.
Behavioral
Lead sponsor
Children's National Research Institute
Other
Eligibility
12 Months to 99 Years
Enrollment
480 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2025 – 2029
U.S. locations
1
States / cities
Washington D.C., District of Columbia
Conditions
Digestion-associated Quality of Life
Interventions
Placebo GI Health Control, Active GI Health Product 1
Dietary Supplement
Lead sponsor
Radicle Science
Industry
Eligibility
21 Years to 105 Years
Enrollment
550 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2026 – 2027
U.S. locations
1
States / cities
Del Mar, California
Conditions
Obstructive Defecation Syndrome, Chronic Constipation, Rectocele, Intussusception
Interventions
Stapled Transanal Resection (STARR) with Transtar (PROXIMATE®) 33 mm Circular Stapler
Procedure
Lead sponsor
Ethicon Endo-Surgery
Industry
Eligibility
21 Years to 80 Years · Female only
Enrollment
75 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2005 – 2008
U.S. locations
7
States / cities
Orlando, Florida • Burlington, Massachusetts • Minneapolis, Minnesota + 3 more
Conditions
Central Line Complication, Central Line Infection, Central Line-Associated Infection, Central Line Sepsis, Short Gut Syndrome, Quality of Life, Pediatric Disorder
Interventions
Wearable Central Line Securement Device (Vest), Traditional Securement Dressing
Device · Other
Lead sponsor
Ryan St. Pierre-Hetz
Other
Eligibility
0 Years to 18 Years
Enrollment
23 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2023
U.S. locations
1
States / cities
Pittsburgh, Pennsylvania