Rare Diseases Clinical Trial
Official title:
Psychosocial Situation of Children With Rare (Congenital) Pediatric Surgical Diseases and Their Families
Families of children with rare diseases (i.e., not more than 5 out of 10.000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and his/her siblings. The aim of the present research project is to examine the psychosocial burden of the children with rare (congenital) pediatric surgical diseases and their family in order to draw attention to a possible psychosocial care gap in this population.
The central objective of the cross-sectional study is to show the psychosocial supply gap for families with children and adolescents affected by rare diseases in the field of pediatric surgery. Among the rare diseases that are included are diaphragmatic hernia, anorectal malformations, esophageal atresia, Hirschsprung's disease and biliary atresia. In order to have a comparative sample, additional data of a matched control group are collected. Central standardized psychosocial outcomes will be assessed from the perspectives of the parents, the affected child and the siblings. ;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Recruiting |
NCT05794217 -
A Multi-Site Leukopak Repository Providing Annotated Biospecimens for Approved Investigator-Directed Biomedical Research Initiatives
|
||
| Completed |
NCT03680365 -
Your Voice; Impact of Duchenne Muscular Dystrophy (DMD) on the Lives of Families
|
||
| Completed |
NCT03290469 -
NICUSeq: A Trial to Evaluate the Clinical Utility of Human Whole Genome Sequencing (WGS) Compared to Standard of Care in Acute Care Neonates and Infants
|
N/A | |
| Not yet recruiting |
NCT05955794 -
Vocal Pattern Assessment as a New Key to Identifying Rare Syndromes
|
N/A | |
| Recruiting |
NCT04429750 -
Intact Cord Resuscitation in CDH
|
N/A | |
| Not yet recruiting |
NCT04152876 -
Functional Genomics of Rare Genetic Diseases: Realization of Innovative Tools With High Diagnostic Power
|
||
| Recruiting |
NCT03683966 -
MigALastat Therapy Adherence Among FABRY Patients: A Prospective Multicentral Observational Study
|
||
| Not yet recruiting |
NCT04319796 -
European Registry on Rare Neurological Diseases
|
||
| Completed |
NCT02736565 -
Pbi-shRNA™ EWS/FLI1 Type 1 LPX in Subjects With Advanced Ewing's Sarcoma
|
Phase 1 | |
| Completed |
NCT05070988 -
Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach
|
||
| Completed |
NCT03563677 -
Dual Guidance Structure for Evaluation of Patients With Unclear Diagnosis in Centers for Rare Diseases
|
N/A | |
| Recruiting |
NCT05499091 -
Functional Study to Indentify Genetic Etiology of Rare Diseases - ORIGIN
|
N/A | |
| Completed |
NCT03954652 -
Whole Genome Trio Sequencing as a Standard Routine Test in Patients With Rare Diseases - "GENOME FIRST APPROACH"
|
N/A | |
| Recruiting |
NCT05703893 -
Investigation of the Neurovegetative Pattern in Patients With Thoracic Aortic Aneurysms (TAA)
|
||
| Enrolling by invitation |
NCT04703179 -
Rare and Undiagnosed Disease Research Biorepository
|
||
| Recruiting |
NCT04024774 -
Diagnostic Research in Patients With Rare Diseases -Solving the Unsolved Rare Diseases
|
||
| Recruiting |
NCT06343558 -
Gait and Balance Impairment in Rare and Very Rare Neurological Diseases
|
||
| Not yet recruiting |
NCT06412718 -
Validation of Human Drugs Target of Repurposed Drugs and Novel Therapies
|
||
| Enrolling by invitation |
NCT04654000 -
Rheopheresis as Adjuvant Treatment of Calciphylaxis
|
N/A | |
| Recruiting |
NCT04651439 -
Severe Bullous Drug Eruption and Filgrastim
|
Phase 2/Phase 3 |