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The Patient Self-Referral Questionnaire

Failing to enrol patients into clinical trials can dramatically delay the development of new treatments. Currently 80% of all clinical trials ( not just NET), fail to hit their full enrolment target.
The NET Patient Foundation is working with the iCancer group on a project to make patient enrolment easier and more effective. The Patient Self-Referral Questionnaire represents a radical departure from current recruitment approaches: instead of relying on consultants and their healthcare teams to inform patients about suitable trials, it will put patients at the forefront of the enrolment process.
If you have five minutes to spare and have any views (extreme, mild or indifferent) about clinical trials, the way they are currently publicised and the ease with which patients can take part in new research, could you complete following brief survey? Your answers will help us to produce a service that NET patients really need, in a form that is engaging, readily accessible and supportive. We intend to launch a pilot version of The Patient Self-Referral Questionnaire in the summer of this year, 2019.
iCancer is a team that supports the NET community, works on novel approaches to modernise the NET education and research pathways, and coordinated the world’s first crowd-funding of a NET clinical trial. This work is funded by VictoryNET




 

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* 1. Have you ever been offered a clinical trial by your clinician?

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* 2. Have you taken part (or are you currently taking part) in a clinical trial?

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* 3. What would put you off taking part in a clinical trial?  (eg too far to travel, unclear information, might make things worse etc)

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* 4. Apart from your healthcare team, how do you research extra information NETs?

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* 5. Which social media channels do you use

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* 6. Would a simple, plain-language website that tells you if you are a potentially suitable participant for a trial, puts you in direct contact with the person managing the trial, and gives you an information pack about the trial to take to your consultant be appealing?

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* 7. Take a look at this clinical trial https://clinicaltrials.gov/ct2/show/study/NCT02749331 - Is it clear to you what this trial is investigating?

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* 8.  If unclear, what do you find confusing? 

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* 9. Is it clear what is required from you, if you did want to take part in this trial?

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* 10. If unclear, what do you find confusing?

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* 11. What (if anything) puts you off the idea of joining this trial?

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* 12. What changes would make this website more useful to you as a patient?

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* 13. Anything else you would like to add?

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