All or Nothing: The False Promise of Anonymity

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 21^st 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 9^th July 2014. Available at http://randomwalker.info/publications/no-silver-bullet-de-identification.pdf

NHGRI Workshop on Sharing Aggregate Genomic Data 2016 Published 6^th 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 28^th 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