Yaffa Rubinstein
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View article: Meta Content Library as a Research Tool
Meta Content Library as a Research Tool Open
View article: The case for open science: rare diseases
The case for open science: rare diseases Open
The premise of Open Science is that research and medical management will progress faster if data and knowledge are openly shared. The value of Open Science is nowhere more important and appreciated than in the rare disease (RD) community. …
View article: Recommendations for Improving the Quality of Rare Disease Registries
Recommendations for Improving the Quality of Rare Disease Registries Open
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key info…
View article: The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers Open
View article: NIH Data Science SIG
NIH Data Science SIG Open
View article: Improving the value of clinical research through the use of Common Data Elements
Improving the value of clinical research through the use of Common Data Elements Open
The use of Common Data Elements can facilitate cross-study comparisons, data aggregation, and meta-analyses; simplify training and operations; improve overall efficiency; promote interoperability between different systems; and improve the …
View article: Erratum: International Charter of principles for sharing bio-specimens and data
Erratum: International Charter of principles for sharing bio-specimens and data Open
View article: The risk of re-identification versus the need to identify individuals in rare disease research
The risk of re-identification versus the need to identify individuals in rare disease research Open
There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches …
View article: NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection
NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection Open
View article: Current trends in biobanking for rare diseases: a review [Corrigendum]
Current trends in biobanking for rare diseases: a review [Corrigendum] Open
The Journal of Biorepository Science for Applied Medicine is an international, peerreviewed, open access journal that focuses on new developments and advances in the emerging and evolving field of biorepository science.This includes biospe…