Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies
Background The promises of improved health care and health research through data-
intensive applications rely on a growing amount of health data. At the core of large-scale …
intensive applications rely on a growing amount of health data. At the core of large-scale …
The reuse of genetic information in research and informed consent
D Lorenzo, M Esquerda, M Bofarull, V Cusi… - European Journal of …, 2023 - nature.com
Important advances in genetics research have been made in recent years. Such advances
have facilitated the availability of huge amounts of genetic information that could potentially …
have facilitated the availability of huge amounts of genetic information that could potentially …
Appropriate safeguards and article 89 of the GDPR: considerations for biobank, databank and genetic research
C Staunton, S Slokenberga, A Parziale… - Frontiers in …, 2022 - frontiersin.org
The collection and use of biological samples and data for genetic research, or for storage in
a biobank or databank for future research, impacts upon many fundamental rights, including …
a biobank or databank for future research, impacts upon many fundamental rights, including …
[HTML][HTML] Data governance for real-world data management: a proposal for a checklist to support decision making
O Solà-Morales, K Sigurðardóttir, R Akehurst… - Value in Health, 2023 - Elsevier
Objectives Real-world data (RWD) and real-world evidence (RWE) can provide extensive
information on healthcare for use in health technology assessment and decision making …
information on healthcare for use in health technology assessment and decision making …
Raising to the challenge: building a federated biobank to accelerate translational research—The University Biobank Limburg
L Linsen, K Vanhees, E Vanoppen, K Ulenaers… - Frontiers in …, 2019 - frontiersin.org
Irreproducibility of research results is one of the major contributing factors to the failure of
translating basic research results into tangible bedside progress. To address this, the …
translating basic research results into tangible bedside progress. To address this, the …
A biobank of stem cells of human exfoliated deciduous teeth: overview of applications and developments in Brazil
BR Zalaf, M Bringel, PK Jorge, B de Oliveira… - Cells Tissues …, 2020 - karger.com
A biobank is an organized collection of biological human material and its associated
information stored for research according to regulations under institutional responsibility …
information stored for research according to regulations under institutional responsibility …
Better governance starts with better words: why responsible human tissue research demands a change of language
MA Lensink, KR Jongsma, SN Boers… - BMC Medical Ethics, 2022 - Springer
The rise of precision medicine has led to an unprecedented focus on human biological
material in biomedical research. In addition, rapid advances in stem cell technology …
material in biomedical research. In addition, rapid advances in stem cell technology …
Opportunistic genetic screening increases the diagnostic yield and is medically valuable for care of patients and their relatives with hereditary cancer
S Fernández-Castillejo, B Roig, M Melé… - Journal of Medical …, 2024 - jmg.bmj.com
Background Multigene panel testing by next-generation sequencing (MGP-NGS) enables
the detection of germline pathogenic or likely pathogenic variants (PVs/LPVs) in genes …
the detection of germline pathogenic or likely pathogenic variants (PVs/LPVs) in genes …
Empirical studies on how ethical recommendations are translated into practice: a cross-section study on scope and study objectives
Background Empirical research can become relevant for bioethics in at least two ways. First,
by informing the development or refinement of ethical recommendations. Second, by …
by informing the development or refinement of ethical recommendations. Second, by …
Advancing the Care of Pancreatic Cancer Patients: Moving Beyond Just Tumour Tissue
SE Kalloger, JM Karasinska, C Warren… - Biomarker …, 2021 - journals.sagepub.com
Biobanking efforts, to establish and grow the pool of available tissue from which evidence on
aetiology, therapeutic susceptibility and prognosis of various diseases, have been underway …
aetiology, therapeutic susceptibility and prognosis of various diseases, have been underway …