Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies

E Pavlenko, D Strech, H Langhof - BMC medical informatics and decision …, 2020 - Springer
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 …

[HTML][HTML] 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 …

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 …

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 …

[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 …

[HTML][HTML] 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 …

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 …

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 …

Empirical studies on how ethical recommendations are translated into practice: a cross-section study on scope and study objectives

J Schwietering, H Langhof, D Strech - BMC Medical Ethics, 2023 - Springer
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 …

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 …