Clinical Trials Logo

Clinical Trial Summary

The main objective of the study is to assess the oral health-related quality of life of patients with rare diseases and followed in the rare disease centers of expertise at Necker Hospital in Paris by semi-structured interviews.


Clinical Trial Description

To date, few studies have used the qualitative method to analyze the oral health-related quality of life and the oral health care pathways of patients with rare diseases, all health sectors combined. The quantitative studies carried out using standardized questionnaires offer only a partial view of how patients feel, both children and adults. The main objective of the study is to assess the oral health-related quality of life of patients with rare diseases and followed in the rare disease centers of expertise at Necker Hospital in Paris by means of a semi-structured interview. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT05070988
Study type Observational
Source Assistance Publique - Hôpitaux de Paris
Contact Lisa Friedlander, DDS, PHD, associate professor
Phone 1 42 16 10 14
Email [email protected]
Status Not yet recruiting
Phase
Start date October 2021
Completion date October 2022

See also
  Status Clinical Trial Phase
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 NCT04651439 - Severe Bullous Drug Eruption and Filgrastim Phase 2/Phase 3
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
Active, not recruiting NCT02736565 - Pbi-shRNAâ„¢ EWS/FLI1 Type 1 LPX in Subjects With Advanced Ewing's Sarcoma Phase 1
Recruiting NCT03563677 - Dual Guidance Structure for Evaluation of Patients With Unclear Diagnosis in Centers for Rare Diseases N/A
Not yet recruiting NCT05046444 - Solving Riddles Through Sequencing
Recruiting NCT03954652 - Whole Genome Trio Sequencing as a Standard Routine Test in Patients With Rare Diseases - "GENOME FIRST APPROACH" N/A
Enrolling by invitation NCT04703179 - Rare and Undiagnosed Disease Research Biorepository
Recruiting NCT04024774 - Diagnostic Research in Patients With Rare Diseases -Solving the Unsolved Rare Diseases
Not yet recruiting NCT04654000 - Rheopheresis as Adjuvant Treatment of Calciphylaxis N/A
Recruiting NCT03491280 - Diagnostic Research in Patients With Rare Diseases - Solving the Unsolved Rare Diseases
Recruiting NCT03854318 - Longitudinal Studies of Patient With FPDMM
Recruiting NCT04419363 - Burosumab in Children and Adolescents With X-linked Hypophosphatemia Phase 4
Recruiting NCT04880356 - Longitudinal Study of Ultra-rare Inherited Metabolic and Degenerative Neurological Diseases.
Recruiting NCT03962452 - Mitochondrial Diseases - Long-read Genome and Transcriptome Sequencing in Cases Unresolved After Short-read Genomics N/A
Recruiting NCT04451902 - COVID-19 and Rare Skin Diseases European Observational Study During an Epidemic