Data Sharing Resources

The pharmaceutical industry, health agencies and other organisations support the responsible sharing of patient-level data to facilitate data-driven research which will ultimately lead to improvements in patient care. PSI fully supports data transparency. On this page is listed some of the clinical data platforms.  If you wish to use data to support your research, or if you are a student or teacher who wants to work with real data, please contact the appropriate organisation, as shown below. PSI has no access to clinical data.

If you are aware of other platforms that could be added to this list, please email psi@mci-group.com.

Platforms for Data Sharing

Organisation/Site name Website Data available Application for access required?
Clinical Study Data Request (CSDR) https://www.clinicalstudydatarequest.com Clinical trial data. Yes (via website)
DRYAD https://datadryad.org Data underlying scientific publications. No
EASY https://easy.dans.knaw.nl/ui/home Research data. Yes (via website)
Edinburgh Data Share https://datashare.is.ed.ac.uk/ Research data produced at University of Edinburgh. Yes (via website)
Nature http://www.nature.com/sdata/policies/repositories Links to various data repositories are provided. N/A
Open Science Framework (OSF) https://osf.io Research data. Yes (via website)
Vivli https://vivli.org/ Global clinical research data. Yes (via website)
Yale University Open Data Access (YODA) Project http://yoda.yale.edu Clinical trial data. Yes (via website)
Dementias Platform UK https://portal.dementiasplatform.uk Dementia-specific data. Yes (via website)
Global Alzheimer’s Association Interactive Network GAAIN http://www.gaain.org/ Alzheimer’s-specific data. Yes (via website)
Immune Tolerance Network Trials https://www.itntrialshare.org Immunology clinical trial data. No
Project Data Sphere https://www.projectdatasphere.org Oncology-specific academic and phase 3 clinical trial data. Yes (via website)
European Medical Information Network http://www.emif.eu/ European health data. Yes (via website)
Health Data Finder http://www.hdf.nihr.ac.uk/ UK health data. Yes (direct contact details for custodian of dataset of interest provided on website)
Swedish National Data Service (SND) https://snd.gu.se/en Swedish research data. No

Upcoming Events

PSI VisSIG Wonderful Wednesdays

Our monthly webinar explores examples of innovative data visualisations relevant to our day to day work. Each month a new dataset is provided from a clinical trial or other relevant example, and participants are invited to submit a graphic that communicates interesting and relevant characteristics of the data.

PSI VisSIG Webinar: Rapid Insights to Data

The field of data visualization is the intersection of data journalism, statistics, graphic design, computer science, neuroscience, and cognitive psychology. We will focus on the latter two fields of data visualization as it relates to data visualization: neuroscience and cognitive psychology.

PSI One-Day Meeting: Non-proportional hazards and applications in immuno-oncology

Hear about potential strategies to handle non-proportional hazards and delayed treatment effects from experts in the field.

PSI One-Day Meeting: Missing Data in Clinical Trials - Past, Present and Future

At this meeting we will present the evolution of missing data approaches, looking at how they have been handled in the past, the current established missing data approaches and the impact of the new ICH E9 R1 addendum on the handling of missing data, focussing in particular on the treatment policy estimand.

PSI Training Course: R for SAS Users

R is quickly gaining popularity within the pharmaceutical industry due to it being a very powerful object-orientated language, and is able to produce analyses and high quality graphics. This will be a hands-on interactive course and will utilise the RStudio Cloud development environment.

PSI Webinar: Oncology Ted Talks (with interaction)

The format of this event will include Ted Talks by all of our speakers with the opportunity for us to have a discussion together after each of the presentations.

PSI EIWG Webinar: Estimands in Oncology - How and Why

A year on after the final ICH E9 estimands addendum was published, we bring estimands to life. Members of the Estimands in Oncology special interest group will describe how the estimand framework provides a common language to describe the diversity of patient journeys and why it is important to address the right question in clinical trials.

PSI Training Course: Data Monitoring Committees (DMCs)

This course will cover the essentials of DMC set up (roles and responsibilities, DMC charter, practical considerations), as well as discussing DMC case studies and the role of DMCs in adaptive trials and during the pandemic. In addition, there will be an interactive DMC workshop.

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