Detalhe da pesquisa
1.
New insights into epidemiological data and impact of the COVID-19 pandemic on IgA vasculitis in children and adults: a French nationwide cohort.
Rheumatol Int
; 43(10): 1791-1798, 2023 10.
Artigo
em Inglês
| MEDLINE | ID: mdl-37438546
2.
Overview of patients' cohorts in the French National rare disease registry.
Orphanet J Rare Dis
; 18(1): 176, 2023 07 03.
Artigo
em Inglês
| MEDLINE | ID: mdl-37400917
3.
The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease.
J Am Med Inform Assoc
; 29(3): 553-558, 2022 01 29.
Artigo
em Inglês
| MEDLINE | ID: mdl-34741516
4.
Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study.
Orphanet J Rare Dis
; 17(1): 430, 2022 12 09.
Artigo
em Inglês
| MEDLINE | ID: mdl-36494730
5.
A multicentre, randomised, double-blind, placebo-controlled trial with the interleukin-1 receptor antagonist anakinra in patients with systemic-onset juvenile idiopathic arthritis (ANAJIS trial).
Ann Rheum Dis
; 70(5): 747-54, 2011 May.
Artigo
em Inglês
| MEDLINE | ID: mdl-21173013
6.
Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases.
Orphanet J Rare Dis
; 16(1): 469, 2021 11 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-34736502
7.
10 years of CEMARA database in the AnDDI-Rares network: a unique resource facilitating research and epidemiology in developmental disorders in France.
Orphanet J Rare Dis
; 16(1): 345, 2021 08 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-34348744
8.
CEMARA an information system for rare diseases.
Stud Health Technol Inform
; 160(Pt 1): 481-5, 2010.
Artigo
em Inglês
| MEDLINE | ID: mdl-20841733
9.
Healthcare trajectory of children with rare bone disease attending pediatric emergency departments.
Orphanet J Rare Dis
; 15(1): 2, 2020 01 03.
Artigo
em Inglês
| MEDLINE | ID: mdl-31900214
10.
CEMARA: a Web dynamic application within a N-tier architecture for rare diseases.
Stud Health Technol Inform
; 136: 51-6, 2008.
Artigo
em Inglês
| MEDLINE | ID: mdl-18487707
11.
Federating patients identities: the case of rare diseases.
Orphanet J Rare Dis
; 13(1): 199, 2018 11 12.
Artigo
em Inglês
| MEDLINE | ID: mdl-30419918
12.
Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study.
Orphanet J Rare Dis
; 12(1): 94, 2017 05 19.
Artigo
em Inglês
| MEDLINE | ID: mdl-28526043
13.
Prevalence of fibrodysplasia ossificans progressiva (FOP) in France: an estimate based on a record linkage of two national databases.
Orphanet J Rare Dis
; 12(1): 123, 2017 06 30.
Artigo
em Inglês
| MEDLINE | ID: mdl-28666455
14.
Prognostic Factors From an Epidemiologic Evaluation of Fibrous Dysplasia of Bone in a Modern Cohort: The FRANCEDYS Study.
J Bone Miner Res
; 31(12): 2167-2172, 2016 12.
Artigo
em Inglês
| MEDLINE | ID: mdl-27340799
15.
A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research.
J Am Med Inform Assoc
; 22(1): 76-85, 2015 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-25038198
16.
Patient information, consents and privacy protection scheme for an information system dedicated to pervasive developmental disorders.
Stud Health Technol Inform
; 205: 755-9, 2014.
Artigo
em Inglês
| MEDLINE | ID: mdl-25160288