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NCT05070988 | Recruiting | Rare Diseases


Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach
Sponsor:

Assistance Publique - Hôpitaux de Paris

Brief 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.

Condition or disease

Rare Diseases

Intervention/treatment

Semi-structured interview

Detailed 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 Type : Observational
Estimated Enrollment : 50 participants
Official Title: Oral Health Related Quality of Life of Patients With Rare Diseases Followed at Necker Hospital: a Qualitative Approach
Actual Study Start Date : October 20, 2021
Estimated Primary Completion Date : October 2022
Estimated Study Completion Date : October 2022

Information not available for Arms and Intervention/treatment

Ages Eligible for Study: 6 Years
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No
Criteria
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

Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach

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Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach

How to Participate

Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.

Locations


Recruiting

France,

Hôpital Necker-Enfants Malades

Paris, France, 75015

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