ArticleJournal of the American Medical Informatics Association : JAMIA2022
The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease.
Article in Journal of the American Medical Informatics Association : JAMIA, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Building a National Interoperable Rare Eye Disease Data Warehouse: Methodological Framework and Implementation Report From the French Rare Eye Disease Database (FREDD) Initiative.JMIR medical informatics · 2026Article
- Beyond genotype: clustering analysis highlights clinical heterogeneity in paediatric familial Mediterranean fever.RMD open · 2026Article
- Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry.BMC global and public health · 2026Review
- Interoperable Integration of a National Rare Disease Registry Into a Rare Eye Disease Data Warehouse: Implementation Study.JMIR medical informatics · 2026Article
- Characteristics of Patients with Myasthenia Gravis in the French Rare Disease Registry.European journal of neurology · 2026Article
- Benefit/risk balance of prone positioning as first line treatment for upper airway obstruction in Robin sequence.European journal of pediatrics · 2025Article
- Achondroplasia and hypochondroplasia in France: a nationwide epidemiological analysis.Orphanet journal of rare diseases · 2025Article
- The European Pediatric Surgical Audit: Improving Quality of Care in Rare Congenital Malformations.European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie · 2025Article
- Diagnostic Impasse and Wandering in Patients With Rare Neuromuscular Diseases: Insights Into Patient Characteristics From the French National Network for Rare Neuromuscular Diseases (FILNEMUS) and the French National Rare Disease Database (BNDMR).European journal of neurology · 2025Article
- An ontology-based rare disease common data model harmonising international registries, FHIR, and Phenopackets.Scientific data · 2025Article
- Diagnostic and referral pathways in patients with rare lipodystrophy and insulin-resistance syndromes: key milestones assessed from a national reference center.Orphanet journal of rare diseases · 2024Article
- Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project.Orphanet journal of rare diseases · 2024Article
- New insights into epidemiological data and impact of the COVID-19 pandemic on IgA vasculitis in children and adults: a French nationwide cohort.Rheumatology international · 2023Observational
- Overview of patients' cohorts in the French National rare disease registry.Orphanet journal of rare diseases · 2023Article
- Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study.Orphanet journal of rare diseases · 2022Article
Corrections and comments
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Authors and funding
6 authors.
Funding
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Abstract
backgroundBaMaRa 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 BaMaRa information system implementation and development across the whole national territory as well as data access requests through BNDMR, the data warehouse which centralizes all BaMaRa data, during the 2015-2020 period. MATERIALS AND
methodsSDM-MR is made up of 60 interoperable items and is routinely collected through BaMaRa in rare disease centers as part of care and discharged into BNDMR after deidentification and data reconciliation. Data access is regulated by a scientific committee.
resultsIn total, 668 002 affected patients had an SDM-MR recorded in BNDMR by the end of 2020 with a mean value of 3.4 activities per patients. Data access was provided for 66 projects.
conclusionThe BaMaRa-BNDMR infrastructure provides an administrative and epidemiological resources for rare diseases in France.
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