References
-
AllTrials
What does all trials registered and reported mean?
2013
Webpage published September 2013. Available at
http://www.alltrials.net/find-out-more/all-trials/ -
Barth-Jones
D C
The antidote for “anecdata”: a little science can separate data privacy facts from folklore
2014
Guest post at Harvard Info/Law, published 21st November 2014. Available at
https://blogs.harvard.edu/infolaw/2014/11/21/the-antidote-for-anecdata-a-little-science-can-separate-data-privacy-facts-from-folklore/ - Bierer B E Li R Barnes M Sim I A global, neutral platform for sharing trial data N Engl J Med 2016 23 Jun 374 25 2411 3 10.1056/NEJMp1605348
-
Cavoukian
A
Castro
D
Big data and innovation, setting the record straight: de-identification does work 2014 Ontario, Canada Information and Privacy Commisioner - Dal-Ré R The ICMJE trial data sharing requirement and participant’s consent Eur J Clin Invest 2016 10.1111/eci.12694
- El Emam K Rodgers S Bradley M Anonymising and sharing individual patient data BMJ 2015 350 10.1136/bmj.h1139
-
EPSRC
Expectation – EPSRC website
2014
Published from October 2014. Available at
https://www.epsrc.ac.uk/about/standards/researchdata/expectations/ - Goldacre B Gray J OpenTrials: towards a collaborative open database of all available information on all clinical trials Trials 2016 17 164 10.1186/s13063-016-1290-8
-
HIPAA
Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule
2010
Webpage updated from March 2010. Available at
http://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/ - Homer N Szelinger S Redman M Duggan D Tembe W Muehling J Pearson J V Spehan D A Nelson S F Craig D W Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays PLoS Genetics 2008 4 8 e1000167 10.1371/journal.pgen.1000167
- Hrynaszkiewicz I Norton M L Vickers A J Altman D G Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers BMJ 2010 340 c181 10.1136/bmj.c181
-
ICO
Anonymisation: managing data protection risk code of practice
2012
Published November 2012. Available at:
https://ico.org.uk/for-organisations/guide-to-data-protection/anonymisation/ . The text excerpt is licensed from the Information Commissioner’s Office under the Open Government Licence (OGL) v3.0 -
IOM
Sharing clinical trial data: maximizing benefits, minimizing risks 2015 The National Academies Press 10.17226/18998 - Lewandowsky S Bishop D Research integrity: don’t let transparency damage science Nature 2016 529 7587 459 61 10.1038/529459a
- Longo D L Drazen J M Data sharing N Engl J Med 2016 374 3 276 7 10.1056/NEJMe1516564
-
MRC
Personal Information in medical research
2000
Published October 2000, revised January 2003. Available at
https://www.mrc.ac.uk/documents/pdf/personal-information-in-medical-research/ -
Narayanan
A
Felten
E W
No silver bullet: de-identification still doesn’t work
2014
Published 9th July 2014. Available at
http://randomwalker.info/publications/no-silver-bullet-de-identification.pdf -
NHGRI
Workshop on Sharing Aggregate Genomic Data
2016
Published 6th September 2016. Available at
https://www.genome.gov/pages/policyethics/genomicdata/aggdatareport.pdf [Last accessed 31st March 2017] -
NHS HRA
Examples – Consent and Participation information sheet preparation guidance
2014
Unknown publication date. Available at
http://www.hra-decisiontools.org.uk/consent/examples.html [Last accessed 31st March 2017] -
OECD
OECD principles and guidelines for access to research data from public funding
2007
Published April 2007. Available at
http://www.oecd.org/sti/sci-tech/38500813.pdf - Ohm P Broken promises of privacy: responding to the surprising failure of anonymisation UCLA L Rev 2009 57 1701
-
OpenTrials
FAQ – OpenTrials
2016
Available at
http://opentrials.net/faq/ -
RCUK
Concordat on Open Research Data launched
2016
Published 28th July 2016. Available at
http://www.rcuk.ac.uk/media/news/160728/ -
Sandercock
P A
Niewada
M
Członkowska
A
International Stroke Trial database (version 2), [dataset] Department of Clinical Neurosciences 2011 University of Edinburgh 10.7488/ds/104 - Sandercock P A Niewada M Członkowska A International Stroke Trial Collaborative Group The International Stroke Trial database Trials 2011 12 101 10.1186/1745-6215-12-101
-
Sandercock
P
Wardlaw
J
Lindley
R
Cohen
G
Whiteley
W
The third International Stroke Trial (IST-3), 2000–2015 [dataset] 2016 University of Edinburgh & Edinburgh Clinical Trials Unit 10.7488/ds/1350 - Sandercock P Wardlaw J Lindley R Whiteley W Cohen G IST-3 stroke trial data available Lancet 2016 387 10031 1904 10.1016/S1474-4422(16)30076-X
- Strom B L Buyse M Hughes J Knoppers B M data sharing, year 1 – access to data from industry-sponsored clinical trials N Engl J Med 2014 371 22 2052 4 10.1056/NEJMp1411794
- Taichman D B Backus J Baethge C Bauchner H de Leeuw P W Drazen J M Fletcher J Frizelle F A Groves T Haileamlak A James A Laine C Peiperl L Pinborg A Sahni P Wu S PLoS Med 2016 13 1 e1001950 10.1371/journal.pmed.1001950
-
Tudur Smith
C
Hopkins
C
Sydes
M
Woolfall
K
Clarke
M
Murray
G
Williamson
P
Good Practice Principles for Sharing Individual Participant Data from Publicly Funded Clinical Trials
2015
Published April 2015. Available at
https://www.methodologyhubs.mrc.ac.uk/files/7114/3682/3831/Datasharingguidance2015.pdf [Last accessed 31st March 2017] -
UKDA
UK data archive – home
2016
Available at
http://www.data-archive.ac.uk/ -
Understanding Society
Understanding Society data access strategy v22
2016
Published February 2016. Available at
https://www.understandingsociety.ac.uk/documentation/getting-started -
University of Cambridge
Funders’ Policies|Research Data Management
2016
Updated since 2014. Available at
http://www.data.cam.ac.uk/funders - Zerhouni E A Nabel E G Protecting aggregate genomic data Science 2008 322 5898 44 10.1126/science.1165490
