Clinical trial matching survey

Clinical trials are used to test new treatments (a new drug) or other interventions (such as a new scan or use of exercise). Clinical trials can provide new treatments and interventions to patients and are vital in the process of continually improving patient care. However, only a small number of patients take part in these trials. One reason is that patients are not aware of trials. Although many patients are told about trials by their doctor, some patients will look for trials themselves.

There are websites where you can search for trials. These may only provide information only and include Government websites (clintrials.gov) or non-for profit (Cancer Council). Some websites offer a service to find or match clinical trials to the patient. The patient may need to register or sign up on the website. Once a patient has given their details their health records may be searched, or they may be contacted directly for more information to help match them to a clinical trial.

We would like to ask for your thoughts on websites that offer to find trials for patient.

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* 1. Are you interested in a clinical trial, either for yourself or someone else?

Yes - for myself

Yes - for someone else

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* 2. Have you ever used a website to find out about trials (e.g. ClinTrial Refer or Healthmatch)?

Yes

If yes, which one(s)?

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* 3. Are you interested in using a website to find out about trials?

Yes

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* 4. If you wanted to find out about trials, would you only want treatment (drug) trials, or would you prefer all types of trials?

Treatment only

All types of trials

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* 5. After adding your details to a website, someone may do any one of the following. Which is best?

Contact you to ask for more information

Look at your medical history

Not contact you again, only using the information you have provided

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* 6. Freely and voluntarily agreeing to take part in something is called consent. On clinical trial matching websites, this can either be asked once (standard consent), or if there are changes, such as the number of times you would like to be contacted (dynamic consent). Which would you prefer?

A ‘standard’ consent that asks your agreement once.

A ‘dynamic’ consent where you will be contacted if something changes

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* 7. If you used a website to find out about trials, what would you want to happen next? Select all that apply.

Be contacted about trials

Be contacted even if no trials available

Continue to be contacted to see if you wish to remain on the register

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* 8. If a trial is available, how often do you want to be contacted?

10 times per year

3 times per month

As often as required

Other (please specify)

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* 9. How would you like to be contacted about any matching trials?

Phone

Either

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* 10. Please read the following privacy statement and indicate if you agree.

Privacy statement: By submitting this form you are agreeing that the VCCC Alliance securely holds your information for the purpose of informing specific research projects carried out within the Alliance and its members. Information provided will not be shared and accessed only when necessary to achieve our business purposes, and wherever possible, the data will be de-identified to perform these functions. The VCCC Alliance stores personal information securely in accordance with the VCCC Alliance Privacy Policy: https://vcccalliance.org.au/about-us/contact/privacy-policy/, Information Management Policy, and Privacy legislation.

I agree