Claude Messiaen
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View article: Prevalence of pediatric neuromuscular disorders in the Southwest region of France
Prevalence of pediatric neuromuscular disorders in the Southwest region of France Open
View article: Epidemiological Study of Pediatric Neuromuscular Disorders in South West France Regions
Epidemiological Study of Pediatric Neuromuscular Disorders in South West France Regions Open
Aim: Very limited epidemiological data on neuromuscular disorders pediatric population exist around the world. In France, such pediatric epidemiological study is seriously lacking. We investigated the pediatric prevalence (under 18) and we…
View article: New insights into epidemiological data and impact of the COVID-19 pandemic on IgA vasculitis in children and adults: a French nationwide cohort
New insights into epidemiological data and impact of the COVID-19 pandemic on IgA vasculitis in children and adults: a French nationwide cohort Open
View article: Overview of patients’ cohorts in the French National rare disease registry
Overview of patients’ cohorts in the French National rare disease registry Open
View article: Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study
Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study Open
View article: Impact of the Covid-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study
Impact of the Covid-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study Open
Background: Preliminary data suggest that COVID-19 pandemic has generated a switch from face-to-face to remote care for individuals with chronic diseases. However, few data are reported for rare and undiagnosed diseases (RUDs). We aimed to…
View article: Impact of the COVID-19 Pandemic on the Care of Rare and Undiagnosed Diseases Patients in France: A Longitudinal Population-Based Study
Impact of the COVID-19 Pandemic on the Care of Rare and Undiagnosed Diseases Patients in France: A Longitudinal Population-Based Study Open
View article: Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases
Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases Open
Background For chronic congenital endocrine conditions, age at diagnosis is a key issue with implications for optimal management and psychological concerns. These conditions are associated with an increase in the risk of comorbid condition…
View article: The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease
The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease Open
Background BaMaRa allows the secure collection and deidentified centralization of medical data from all patients followed-up in a rare disease expert network in France, based on a minimum data set (SDM-MR). The present article describes Ba…
View article: 10 years of CEMARA database in the AnDDI-Rares network: a unique resource facilitating research and epidemiology in developmental disorders in France
10 years of CEMARA database in the AnDDI-Rares network: a unique resource facilitating research and epidemiology in developmental disorders in France Open
View article: Healthcare trajectory of children with rare bone disease attending pediatric emergency departments
Healthcare trajectory of children with rare bone disease attending pediatric emergency departments Open
Background Children with rare bone diseases (RBDs), whether medically complex or not, raise multiple issues in emergency situations. The healthcare burden of children with RBD in emergency structures remains unknown. The objective of this …
View article: Federating patients identities: the case of rare diseases
Federating patients identities: the case of rare diseases Open
View article: Prevalence of fibrodysplasia ossificans progressiva (FOP) in France: an estimate based on a record linkage of two national databases
Prevalence of fibrodysplasia ossificans progressiva (FOP) in France: an estimate based on a record linkage of two national databases Open
View article: Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study
Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study Open
View article: Prognostic Factors From an Epidemiologic Evaluation of Fibrous Dysplasia of Bone in a Modern Cohort: The FRANCEDYS Study
Prognostic Factors From an Epidemiologic Evaluation of Fibrous Dysplasia of Bone in a Modern Cohort: The FRANCEDYS Study Open
Fibrous dysplasia of bone (FD) is a rare genetic but sporadic bone disease that can be responsible for bone pain, fracture, and bone deformity. The prognosis may be difficult to establish because of the wide spectrum of disease severity. W…
View article: The French minimum data for rare diseases, Fast health interoperability resource (FHIR) format
The French minimum data for rare diseases, Fast health interoperability resource (FHIR) format Open