Rare Diseases Clinical Trial
— RaroDentAXE3Official title:
Oral Health Related Quality of Life of Patients With Rare Diseases Followed at Necker Hospital: a Qualitative Approach
Verified date | June 2023 |
Source | Assistance Publique - Hôpitaux de Paris |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational |
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.
Status | Completed |
Enrollment | 28 |
Est. completion date | November 29, 2021 |
Est. primary completion date | November 29, 2021 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 6 Years and older |
Eligibility | Inclusion Criteria: - Minor and adult patients with rare diseases aged of at least 6 years old and followed at the Necker Enfant Malades Hospital, Paris - Patients with the 3 most frequent rare diseases of each rare disease Necker reference center participating in the study (10 centers : Chronic And Malformative Disorders Of The Esophagus / Inflammatory diseases of the bile ducts and autoimmune hepatitis / Constitutional Bone Diseases / Inherited Metabolic Diseases / Biliary Atresia And Genetic Cholestases / Vascular Diseases Of The Liver / Developmental Anomalies and Malformative Syndromes of Ile-De-France / Rare Causes Intellectual Disabilities / Complex congenital heart defects / Childhood cerebrovascular pathologies) - Patients who consulted between 1.1.2017 and 1.1.2020 the relevant rare disease reference center at Necker hospital - Patients seen at least once in the medical genetics department of Necker Hospital - Information and non-opposition of adult patients / holders of parental authority of minor patients and minor patients to participate in the study Exclusion Criteria: Patients who do not speak French |
Country | Name | City | State |
---|---|---|---|
France | Hôpital Necker-Enfants Malades | Paris |
Lead Sponsor | Collaborator |
---|---|
Assistance Publique - Hôpitaux de Paris |
France,
Friedlander L, Berdal A, Cormier-Daire V, Lyonnet S, Garcelon N. Determinants of dental care use in patients with rare diseases: a qualitative exploration. BMC Oral Health. 2023 Jun 22;23(1):413. doi: 10.1186/s12903-023-03048-1. — View Citation
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Oral health-related quality of life assessment | Qualitative method from a semi-structured interview. | Day 0 | |
Secondary | Description of oral health care pathways | Description from the semi-structured interviews. | Day 0 | |
Secondary | Inequalities in access to oral health care | Description of inequalities in access to oral health care. Description from the semi-structured interviews. | Day 0 |
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