Clinical trials are used to test new drugs and other types of treatment. Over the past couple of years, clinical trials are coming on line for people with Gorlin Syndrome. The information below offers some guidance for people thinking about trials. Clinical trials aim to:
- Confirm the drug works
- Confirm that the drug also meets the individual’s needs
- See how often side effects happen
- See how well a drug is ‘tolerated’
- Work how much the drug will costs to meet these needs
To achieve all the aims, clinical trials must be carefully designed and include several different components. The best trials are called Double Blinded Controlled Randomised Clinical Trials. These are designed to stop the trial team from ‘cheating’. A trial team may deliberately cheat because they want to make money from the new drug. But, more often, they can subconsciously cheat because they want the treatment, they have spent their lives developing to work. Treatments which have not been through this process should only very occasionally be used.
It’s helpful to understand what all this means:
- Double blinded
There are some other important things to understand when considering whether to join a trial.
- Inclusion criteria
- Exclusion criteria
- Informed Consent
- Ethics Committee
To expand on all the above information follow this link https://gorlingroup.org/gsg/wp-content/uploads/2018/12/Understanding-Clinical-Trials-2.pdf
The Gorlin Syndrome Group would love to hear about your experiences of clinical trials. We’d also like to know if you have any unanswered questions. We’ll address them by revising this page.
There is a lot more excellent information about clinical trials on The Cancer Research UK website: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/how-to-join-a-clinical-trial/who-can-take-part-in-a-clinical-trial.