Quality, quantity and harmony: The DataSHaPER approach to integrating data across bioclinical studies.
10.1093/ije/dyq139 · 2010
Toward a roadmap in global biobanking for health.
10.1038/ejhg.2012.96 · 2012
Biobanks in Europe: Prospects for Harmonisation and Networking
2010
Sharing research data to improve public health.
10.1016/s0140-6736(10)62234-9 · 2011
Hidden concerns of sharing research data by low/middle-income country scientists.
10.1080/11287462.2018.1441780 · 2018
Enabling Sharing and Reuse of Scientific Data.
10.1080/13614576.2014.883936 · 2014
Global perspectives of research data sharing: A systematic literature review.
10.1016/j.lisr.2019.04.004 · 2019
Comment: The FAIR Guiding Principles for scientific data management and stewardship.
10.1038/sdata.2016.18 · 2016
Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health.
10.1089/bio.2017.0110 · 2018
The “A” of FAIR - As Open as Possible, as Closed as Necessary.
10.1162/dint_a_00027 · 2020
Regulation 2016/679 of the European Parliament and the Council of the European Union.
2016
Cost of not having FAIR research data: Cost-Benefit analysis for FAIR research data
2018
Data model harmonization for the All Of Us Research Program: Transforming i2b2 data into the OMOP common data model.
10.1371/journal.pone.0212463 · 2019
Transforming and evaluating electronic health record disease phenotyping algorithms using the OMOP common data model: a case study in heart failure.
10.1093/jamiaopen/ooab001 · 2021
DataSHIELD: taking the analysis to the data, not the data to the analysis.
10.1093/ije/dyu188 · 2014
Business Models for Sustainable Data Repositories.
10.1787/302b12bb-en · 2017
Networked research infrastructures and their governance: The case of biobanking.
10.1093/scipol/scs033 · 2012
EU-funded initiatives for real world evidence: descriptive analysis of their characteristics and relevance for regulatory decision-making.
10.1136/bmjopen-2018-021864 · 2018
Open Science, Open Data, and Open Scholarship: European Policies to Make Science Fit for the Twenty-First Century.
10.3389/fdata.2019.00043 · 2019
Policy Recommendations: Cost-Benefit analysis for FAIR research data
2018
Model organism databases: Essential resources that need the support of both funders and users.
10.1186/s12915-016-0276-z · 2016
Towards a European health research and innovation cloud (HRIC).
10.1186/s13073-020-0713-z · 2020
BBMRI-ERIC as a resource for pharmaceutical and life science industries: The development of biobank-based Expert Centres.
10.1038/ejhg.2014.235 · 2015
National biobanks: Clinical labor, risk production, and the creation of biovalue.
10.1177/0162243909340267 · 2010
Understanding public reactions to commercialization of biobanks and use of biobank resources.
10.1016/j.socscimed.2016.06.028 · 2016
Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.
10.1371/journal.pone.0221496 · 2019
Transnational access to large prospective cohorts in Europe: Current trends and unmet needs.
10.1016/j.nbt.2018.10.001 · 2019
From the principles of genomic data sharing to the practices of data access committees.
10.15252/emmm.201405002 · 2015
Questions for Artificial Intelligence in Health Care.
10.1001/jama.2018.18932 · 2019
Stakeholders’ views on data sharing in multicenter studies.
10.2217/cer-2017-0009 · 2017
Health research access to personal confidential data in England and Wales: assessing any gap in public attitude between preferable and acceptable models of consent.
10.1186/s40504-014-0015-6 · 2014
"Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study.
10.1186/1471-2288-13-72 · 2013
Attitudes of research participants and the general public towards genomic data sharing: A systematic literature review.
10.1586/14737159.2014.961917 · 2014
Systematic review of participants’ attitudes towards data sharing: A thematic synthesis.
10.1177/1355819617751555 · 2018
“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland [version 2; referees: 2 approved].
10.12688/wellcomeopenres.13531.2 · 2019
Acceptability and perceived barriers and facilitators to creating a national research register to enable “direct to patient” enrolment into research: the Scottish Health Research Register (SHARE).
10.1186/1472-6963-13-422 · 2013
The One-Way Mirror: Public attitudes to commercial access to health data.
2016
The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research.
10.1159/000375441 · 2015
Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.
10.1038/ejhg.2012.104 · 2013
Wellcome Global Monitor: How does the world feel about science and health?
2019
