Talking Clinical Trials: Participant's experience and perspective

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Join Colm, Professor Steve Macfarlane, Maree Mastwyk, Trish and John as they discuss the personal and professional characteristics of a clinical trial.

Professor Steve Macfarlane is the Head of Clinical Services at HammondCare's Dementia Centre and his colleague, Maree Mastwyk is a Team leader of Clinical trials. Together they define clinical trials in a professional context and provide their expertise on how to operate a clinical trial.

John, a person living with dementia and his partner Trish are both currently on a clinical trial. They describe their personal experiences of this trial.

The Australian Clinical Trials Alliance’s ‘Report on the Activities & Achievements of Clinical Trials Networks in Australia’ and an article by the Western Alliance are informative resources on the operations of clinical trials in Australia.

Policy & Medicine’s article 'The Importance of Clinical Trials' explains the impact of clinical trials in America.

ANZCTR is an online registry for of clinical trials being undertaken predominately in Australia and New Zealand, and to a smaller extent other parts of the globe. This link connects you to a similar network in the America and here is a dementia research registry located in the United Kingdom.

*We would like to acknowledge as clinical best practise is continuously evolving that the comments made in this episode is reflective of the period leading up to the 7th of October.

Below we have listed the definitions of some terms mentioned in this episode:

Efficacious: Something is able to produce its intended result.

Placebo: A substance given to someone who is told that it is a particular medicine, either to make that person feel as if they are getting better or to compare the effect of the particular medicine when given to others.

Sponsor: Any individual or group that provides financial or material support to a study or endeavour in return for commercial advertisement.

Comparator: The comparator study is used to compare the effectiveness of the investigational product to the existing drug.

Tolerability: Represents the degree to which overt adverse effects can be tolerated by the subject/patient.

Con-meds: Concomitant medications (con-meds) are any prescription or over-the-counter drugs and supplements taken in addition to an investigational therapy by a study subject.

Proof of concept: Proof of concept (POC) is an exercise in which work is focused on determining whether an idea can be turned into a reality. A proof of concept is meant to determine the feasibility of the idea or to verify that the idea will function as envisioned. It is sometimes also known as proof of principle.

Adverse events: An unexpected medical problem that happens during treatment with a drug or other therapy. Adverse events may be mild, moderate, or severe, and may be caused by something other than the drug or therapy being given. Also called adverse effect.
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