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Helping you share your clinical trials data

Rachel Knowles

Rachel Knowles

Clinical trials take a lot of time, money and effort – for everyone involved. So it makes sense to make the most of the data collected. We’ve launched two new initiatives to make it easier for researchers to share their clinical trials data. MRC Programme Manager, Rachel Knowles, explains how you can make use of them to benefit your research.

Clinical trials generate many rich and diverse datasets. By sharing these beyond the original research team, you maximise the value of these data and give other researchers opportunities to use them for new discoveries and collaborations.

More and more, researchers are demonstrating that they are willing to share their data. Yet we know that preparing and storing data properly, making information about a dataset available, and controlling access to protect participant confidentiality, all require time and effort.

Add your trial to a searchable list

In March 2018, we began working with two services that support data-sharing by researchers. We’ve joined up with an initiative called Clinical Study Data Request (CSDR), and begun working with ReShare at the UK Data Service.

Have you ever spent days trawling through hundreds of documents to try and find the trial you want? Both CSDR and ReShare provide web catalogues of datasets, to make data easier to find and access.

Manage data access

Clinical study data request logo

Would you like to manage access to your data with an independent review panel? Well now CDSR is here to help. CSDR is a data sharing platform established by several pharmaceutical companies. We’ve now joined as an academic funder, alongside Wellcome, Cancer Research UK and the Bill and Melinda Gates Foundation.

CSDR has an independent review panel who review all requests for data. The dataset stays with the original research team and is only shared if a request is approved by the panel.

The CSDR website has a searchable list of clinical trials datasets that are available to share. Any clinical trial can be included in CSDR, so go ahead and share yours!

Track new publications

ReShare logo

ReShare

Struggling to keep track of new publications? You could benefit from ReShare, a national repository for research data. It has a searchable list of datasets and each dataset is given a unique DOI (identifier), which can help researchers to track any new publications involving the dataset.

Any researcher can deposit data with ReShare, and it’s completely free to use. What’s more, if you’re new to ReShare, they can offer you additional support to help you prepare and deposit your data. They’re keen to highlight new deposits of data and user’s experiences with the repository – so if you’re happy for yours to be featured, let them know!

The depositing research team decide whether the data should be open or safeguarded, and the UK Data Service can help you make this decision. Controlled access may be needed to protect the confidentiality of individual participants and the UK Data Service will help you handle access controls.

Removing the barriers

We’re encouraging all clinical trials researchers funded by the MRC to share their data. Over the next two years, we’ll monitor the use of CSDR and ReShare to find out if these services successfully remove barriers and increase sharing of clinical trials data.

We’re also very keen to make sure that research teams who share data are given credit for this, so we’ll be aiming to track publications and outputs from shared data.

Any lessons that we learn will help us to provide future services that make data sharing easier and encourage greater re-use of valuable research data.

If you have any questions, contact Rachel Knowles.

Check out the CSDR webinar 

Find out about the next ReShare webinar

2 Comments Post a comment
  1. norman duncan #

    The issue is safeguard of material not as yet patented. What is the confidential feature.

    May 3, 2018
    • pkiviniemi #

      Dear Norman,

      When deciding to share data, it is important to consider whether appropriate access controls can protect patents, IP and/or participant confidentiality. In a minority of cases, safeguards to allow restricted sharing may not be possible or it may be important to delay sharing until a patent is approved.

      All the best,
      Rachel Knowles

      May 3, 2018

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