ArticleLearning health systems2019
National platform for Rare Diseases Data Registry of Japan.
Article in Learning health systems, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed.
- Egypt Genome: Towards an African new genomic era.Journal of advanced research · 2025Review
- Towards a sustainable rare disease and orphan drug ecosystem in Saudi Arabia: policy insights from a multi-stakeholder workshop.Frontiers in pharmacology · 2025Article
- Clinical landscape of citrin deficiency: A global perspective on a multifaceted condition.Journal of inherited metabolic disease · 2024Review
- Design and implementation of a hybrid cloud system for large-scale human genomic research.Human genome variation · 2023Article
- A State-of-the-Art Roadmap for Biomarker-Driven Drug Development in the Era of Personalized Therapies.Journal of personalized medicine · 2022Review
- The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- 10 years of CEMARA database in the AnDDI-Rares network: a unique resource facilitating research and epidemiology in developmental disorders in France.Orphanet journal of rare diseases · 2021Article
- National platform for Rare Diseases Data Registry of Japan.Learning health systems · 2019Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionIn Japan, there are approximately 300 projects conducting research on rare diseases supported by the Ministry of Health, Labour and Welfare of Japan (MHLW) and the Japan Agency for Medical Research and Development (AMED). Diverse data, including clinical, genomic, and sample-related data, are generated by these projects. However, at present, such data are managed individually by each project. This makes it difficult for third parties to ascertain the data generated by projects.
methodsAgain this background, at the beginning of 2017, the AMED started the National Platform for Rare Diseases Data Registry of Japan (RADDAR-J), whose mission is to construct a cross-sectional data integration platform incorporating projects supported by the AMED and MHLW. RADDAR-J promotes data sharing by the projects in accordance with the data-sharing policy established by the AMED, which classifies data sharing into three categories based on the strategies used to protect the rights of researchers while promoting data sharing. RADDAR-J integrates and analyzes data shared by each project to add value to the resources and promote secondary use by third parties while protecting the rights of the researchers who shared their data. The platform is designed to provide incentives to projects that shared their data by supporting registry construction or genomic analysis to promote data sharing. RADDAR-J also has the function of data identification to securely integrate data originating from the same person. RADDAR-J accelerates clinical research by encouraging each project to utilize a central ethics committee. RESULTS/
conclusionThe use of the platform by projects is expected to lead to streamlined data collection, improved quality assurance, improved access to data, and promotion of joint research and the secondary use of shared data. These benefits will accelerate research into diagnosis and treatment technologies and will hopefully lead to improved quality of life for patients with rare diseases.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.