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In Australia, the Clinical Trial Action Group (CTAG) and the Pharmaceutical Industry Working Group have been working together to improve the Australian clinical trials operating environment. As a result a series of CTAG Discussion Papers have been issued. In response to Discussion Paper 4 – Strategies to Improve Patient Recruitment, the Juvenile Diabetes Research Foundation (JDRF) has issued a set of recommendations.

The Australian JDRF has a strong interest in seeing an increased volume and quality of clinical trials being conducted in Australia, and believes that active patient group involvement is a key success factor in trial establishment, funding, and delivery. Their recommendations and observations are noted below, and have merit in other disease states around the globe. Patient recruitment companies and patient advocacy organizations have a natural alliance and a mutual benefit to bring clinical trials to patients.

Industry to consider networks with dedicated patient referral functions provided by patient groups
• Change the nature of patient recruitment to being supply driven (recruited and qualified in advance of need) rather than demand driven (where patients are generally only sought in response to the needs of each trial, one after the other)
• Provide a base of available patients from disease subsets that can be marketed to pharmaceutical companies as a ‘ready to go’ cohort for trial participation
• Harness existing health care professional relationships that most groups will have to engage and inform clinicians as well, and to include them more actively in ongoing patient recruitment planning
• Coordinate one-off access to privacy-constrained databases to access patients interested in trials (which isn’t practical to do on a trial by trial basis).

Leverage international examples of patient group-driven recruitment success such as in the US
• JDRF in the US has created an online customized clinical trials listing service targeted at potential patient participants – the JDRF Clinical Trials Connection. It provides information on what is involved in participating in a clinical trial, and simplifies the process of finding trials that are of interest to the person (or their child).
• There are already 8,700 people signed up to the JDRF Clinical Trials opt-in database, interested in the right clinical trial opportunity.

That contrary to some beliefs there is proven substantial patient interest in trial participation
• While JDRF is interested primarily in Type 1 diabetes clinical trials, it conducted a survey of its members from its database in December 2009 found that 90% of respondents would be interested in participating in an approved clinical trial (there are 70,000 people in total on JDRF’s database).

An effective starting point with one disease could be scalable to other disease areas:
• A referral network could be applied to other disease areas, without replicating the underlying data capture capabilities

For JDRF’s complete response visit: http://www.innovation.gov.au/Industry/Pharmaceuticals/Documents/JDRF_Discussion_Paper_Four.pdf