Clinical Trials

Clinical Trials

CLINICAL TRIALS AND THE BENEFITS OF USING LINKED DATA

Many clinical trials today require long term participant follow up. The longer the follow up required, the more participants lost to follow up.

Linked administrative data (e.g. hospital admissions, cancer registries and deaths) can be used to follow up clinical trial participants. There are a range of benefits to this approach including:

  • Reduction or elimination of the need for follow up visits
  • Data collection on participants lost to follow up
  • Follow up for very long time periods is possible e.g. decades
  • Cost-effectiveness

HOW DO I ACCESS LINKED DATA FOR CLINICAL TRIAL FOLLOW UP?

Data Available

Visit the PHRN website for information on the data collections linked by the PHRN infrastructure including links to data dictionaries.

http://www.phrn.org.au/for-researchers/data-collections-available/

Consent

Ensure that participants have provided consent for linkage of their clinical trial data to administrative data.

Applications

Submit an application for data through the PHRN Online Application System (OAS). A one-stop site for your project application, the OAS enables researchers to submit their application to multiple jurisdictions simultaneously and track their applications online.

https://oas.phrn.org.au

Approvals

Approvals are required from the data linkage unit/s, data custodians and the relevant Human Research Ethics Committee/s.

Access

The PHRN offers a number of eResearch tools to assist researchers to access linked data.

Webinar Series : ACTA and PHRN on Clinical Trials and Data Linkage

This webinar series covers the following topics:

  • PHRN Data Linkage webinar 1- Designing Clinical Trials using Linked Data
  • PHRN Data Linkage webinar 2 - Accessing Linked Data
  • PHRN Data Linkage webinar 3 - Ethical considerations in using Linked Data
  • PHRN Data linkage webinar 4 - Accessing MBS and PBS data

Clinical Trials and Data Linkage Webinar Series

Guidance Manual : ACTA and PHRN on Clinical Trials and Data Linkage

Using Linked Administrative Data in Clinical Trials: A Guide for Clinical Trialists and Researchers

 

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UPDATES

PHRN COVID-19 Offering

Our network remains open. The network is interoperable & can source expertise, technology & data from around the country. Our expert staff are highly qualified & experienced in linkage of patient data, including population-based administrative data as well as linkage of research cohort data.

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