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Box 3.1 Examples of data‐sharing platforms and data repositories

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Clinical Study Data Request (CDSR) (https://clinicalstudydatarequest.com/)

Includes access to data from a consortium of pharmaceutical companies including Astrellas Pharma, Bayer, Chugai, Esai, Novartis, ONO, Roche, Sanofi, Sunovion, Shiongi, UCB and ViiV; and academic research funders including the Wellcome Trust, the Bill and Melinda Gates Foundation, the UK Medical Research Council and Cancer Research UK. Lists anonymised data from over 3,000 studies (10 from academic funders). Data are provided in a secure analytic environment that includes free and open source analytic packages and software. Access to data is provided for 12 months that can be extended to 24 months. No charge for access is made.

DataSphere (https://www.projectdatasphere.org/)

Provides access to IPD from academic and industry phase III cancer clinical trials. Includes 160 datasets and data from over 10,000 patients. Data are made available within a secure environment that includes SAS analytic tools. Some data may be downloaded. No charge for access is made.

SOAR (https://dcri.org/our‐work/analytics‐and‐data‐science/data‐sharing/)

Co‐located with the Duke Databank for Cardiovascular Disease. Includes clinical study reports and de‐identified IPD from Bristol–Myers Squibb clinical trials for drugs licensed for use in the United States and Europe and completed after 2008. Information from terminated programmes to be available two years after discontinuation. Data are released to researchers and no charge is made.

Vivli (http://vivli.org/)

An independent repository and analytic platform providing access to IPD and metadata. Participating commercial partners include AbbVie, Biogen, Boehringer Ingelheim, Celgene, Daiichi‐Sanko, GSK, Lilly, Pfizer, Takeda, Tempus and UCB, along with a number of academic and charitable partners. Includes data from almost 5,000 clinical trials and 2.7 million participants. Data are accessed and analysed in a secure analytic environment that includes a number of commercial and open source software and analytic packages; data may also be downloaded with permission. Data access and use is free for a period after which a charge is made, currently $12 or $25 per day depending on whether their standard or premium research environment is being used.

Yale Open Data (http://yoda.yale.edu/)

Includes access to data from Johnson & Johnson and SI‐BONE Inc. and from Queen Mary University of London. Depending on the data partner, IPD are either made available in a personalised account on a secure data server or released using a secure electronic data transfer. No charge for access to data is made.

All platforms require submission of a research proposal that is reviewed before data are released, and are subject to data sharing agreements. Some publicly list applications and access decisions as well as publishing project findings. Information is correct as of March 2020. The status of platforms change frequently and up to date and further information should be sought from their websites.

Source: Lesley Stewart.

In the longer term, it may be possible to use trial data–sharing platforms and repositories to assemble complete IPD meta‐analysis datasets. However, as many IPD meta‐analysis projects will seek to include older or academic/non‐industry trials, neither of which are well represented in existing repositories, for the foreseeable future most IPD meta‐analyses will continue to be conducted by negotiating provision of IPD directly from and working with trial investigators. This may be supported or supplemented by obtaining IPD from repositories and data sharing platforms.

Individual Participant Data Meta-Analysis

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