Results 11 to 20 of about 130 (105)
Toward a common standard for data and specimen provenance in life sciences
Learning Health SystemsOpen and practical exchange, dissemination, and reuse of specimens and data have become a fundamental requirement for life sciences research. The quality of the data obtained and thus the findings and knowledge derived is thus significantly influenced by
Rudolf Wittner +35 more
doaj +2 more sources
BBMRI-ERIC DIRECTORY USER MANUAL [PDF]
Biopreservation and Biobanking, 2019 Short user manual for the BBMRI-ERIC Directory to explain the basic concepts. The manual describes how to navigate the Directory and to search for biobanks or collections.
de Andrade, F.M, van Enckevort, DJ
+10 more sources
BBMRI-ERIC Directory Manual for data managers
, 2021 This manual is a technical description of the BBMRI-ERIC Directory data model and the process of updating data in the Directory. The intended audience of this manual is the National Node Data Manager.
van Enckevort, Esther +3 more
+18 more sources
BMC Medical Ethics, 2021 Background Informed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants.
Cinzia Colombo +10 more
doaj +1 more source
Paediatric biobanking for health: The ethical, legal, and societal landscape
Frontiers in Public Health, 2022 Biobanks play a central role in pediatric translational research, which deals primarily with genetic data from sample-based research. However, participation of children in biobanking has received only limited attention in the literature, even though ...
Sara Casati +5 more
doaj +1 more source
Lightweight Distributed Provenance Model for Complex Real–world Environments
Scientific Data, 2022 Provenance is information describing the lineage of an object, such as a dataset or biological material. Since these objects can be passed between organizations, each organization can document only parts of the objects life cycle.
Rudolf Wittner +7 more
doaj +1 more source
Ethical layering in AI-driven polygenic risk scores—New complexities, new challenges
Frontiers in Genetics, 2023 Researchers aim to develop polygenic risk scores as a tool to prevent and more effectively treat serious diseases, disorders and conditions such as breast cancer, type 2 diabetes mellitus and coronary heart disease. Recently, machine learning techniques,
Marie-Christine Fritzsche +10 more
doaj +1 more source
Data Science Journal, 2023 The Horizon Europe project ISIDORe is dedicated to pandemic preparedness and responsiveness research. It brings together 17 research infrastructures (RIs) and networks to provide a broad range of services to infectious disease researchers.
Romain David +44 more
doaj +1 more source
Frontiers in Medicine, 2022 In 2017, Polish Biobanking Network was established in Poland, within BBMRI.pl project titled “Organization of Polish Biobanking Network within the Biobanking and Biomolecular Resources Research Infrastructure BBMRI-ERIC” as a strategic scientific ...
Agnieszka Matera-Witkiewicz +11 more
doaj +1 more source
A proposal for an international Code of Conduct for data sharing in genomics
Developing World Bioethics, Volume 23, Issue 4, Page 344-357, December 2023., 2023 Abstract As genomic research becomes commonplace across the world, there is an increased need to coordinate practices among researchers, especially with regard to data sharing. One such way is an international code of conduct. In September 2020, an expert panel consisting of representatives from various fields convened to discuss a draft proposal ...
Amal Matar +9 more
wiley +1 more source