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
Status Completed
Phase
Start date October 20, 2021
Completion date November 29, 2021

See also
  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-shRNAâ„¢ EWS/FLI1 Type 1 LPX in Subjects With Advanced Ewing's Sarcoma Phase 1
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
Enrolling by invitation NCT04654000 - Rheopheresis as Adjuvant Treatment of Calciphylaxis N/A
Recruiting NCT04651439 - Severe Bullous Drug Eruption and Filgrastim Phase 2/Phase 3
Recruiting NCT03491280 - Diagnostic Research in Patients With Rare Diseases - Solving the Unsolved Rare Diseases
Recruiting NCT03854318 - Longitudinal Studies of Patient With FPDMM