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Research

Clinical trials data sharing resources: CSDR and ReShare

The MRC has two services available to MRC-funded researchers to enable data sharing from clinical trials.

  1. Clinical Study Data Request (CSDR) - we joined in April 2018 as part of an academic funder consortium
  2. ReShare, at the UK Data Service - a national repository for research data

Clinical trials research generates many rich and diverse datasets. We support the sharing of clinical trials data for use in further research, as this offers valuable opportunities for new research, discoveries and collaborations.

Our funded researchers can choose to use either CSDR or ReShare services to enable them to share clinical trials data, or even use both. For example, a dataset can be listed and shared using CSDR, then deposited in ReShare where it is available for further requests.

Clinical Study Data Request (CSDR)

We joined Clinical Study Data Request (CSDR) as part of an academic funder consortium alongside Wellcome, Bill and Melinda Gates Foundation and Cancer Research UK in 2018. CSDR was originally set up by several pharmaceutical companies to list clinical trials datasets that are available for reuse.

The CSDR website provides a searchable listing of trials. Researchers can apply for access to these datasets, for example to use in a systematic review, meta-analysis or other research.

Data access requests are reviewed by an independent review panel (or access committee) and Wellcome provides administrative support.

Trials listed on CSDR are available to other researchers under a data sharing agreement. The data remains with the original researcher until a data access request is approved, and it is then shared as a download.

A data sharing coordinator:

  1. Supports researchers to list their datasets
  2. Manages the data access request, review and release process
  3. Helps trialists prepare data sharing agreements

CSDR offers:

  • A searchable catalogue for listing datasets
  • An independent data access committee
  • Templates for a Data Sharing Agreement
  • Guidance on preparing data

CSDR does not provide a data repository or data storage.

UKDS ReShare

ReShare

We encourage researchers to consider using the UK Data Service (UKDS) ReShare  facility, which is a data repository suitable for clinical trials data. UKDS staff help researchers to prepare and deposit their data.

Researchers who deposit data in ReShare decide whether access is fully open or controlled (‘safeguarded’) and UKDS staff can help with this decision.

Safeguarded access means that applications to use the data must first be approved, which helps to protect the confidentiality of participant data.

UKDS staff will help researchers manage access requests for safeguarded datasets held in ReShare.

If access is approved, UKDS manage release of the data to the researcher under an end user licence.

ReShare offers:

  • A searchable catalogue for listing datasets
  • A permanent data repository
  • A unique DOI (digital object identifier) to identify the dataset
  • End user licenses for researchers accessing data
  • Guidance on preparing data

Credit for data sharing

Research teams who share their data should receive credit for this. For example, data sharing agreements should require that the original research team are acknowledged in publications using the shared data, or that a dataset (DOI) is cited to enable tracking of outputs.

More information

To find out more about data sharing initiatives, or talk about other data sharing issues, please contact Rachel Knowles.

Watch a webinar on CSDR.

Information about the next ReShare webinar.