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. The NSW Population & Health Services Research Ethics Committee provides an example of wording about data linkage in a PICF. See www.cancer.nsw.gov.au/data-research/research-ethics/submissions (Item No. 10).

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

 

Clinical Trials Impact story

In the long run: How data linkage supports clinical trials Read Here

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UPDATES

Latest Impact Story

In the long run: How data linkage supports clinical trials. When QIMR Berghofer researcher Professor Rachel Neale was studying vitamin D, she knew it had been linked to a host of serious diseases. Professor Neale says linked data—such as hospital records, cancer registers and death records—have been incredibly important for the study.

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NEWS & EVENTS

LATEST NEWS

Our next Linkage Luminaries webinar will be taking place on Wednesday 23 June at 12noon AEST, 11.30am ACST, 10am AWST with Professor David Preen, Chair in Public Health, UWA School of Population and Global Health. The webinar series aims to showcase some of Australia's leading researchers who have used data linkage in their research.

PHRN ONLINE APPLICATION SYSTEM (OAS)