This survey is conducted by a research team in the University of Oxford, funded by a body of European Commission, in an effort to improve clinical trials for rare cancer patients. If you are making decisions as a family member/ legal guardian/ carer of a rare cancer patient, please do complete this survey on their behalf.
Please be assured that your responses to this survey will remain anonymous.

The information you provide for this survey is to be viewed and used by The Rare Cancer Project, Oxford University for research purposes only. No commercial company has been involved in the creation of this survey.

Please find more information about clinical trials in this leaflet

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* 1. Do you complete this survey as a

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* 2. What is your age?

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* 3. What is your sex?

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* 4. Where do you live?

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* 5. What rare cancer type do you suffer from?

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* 6. If you were asked to participate in a clinical trial what would be more important to you?

  Not important at all Less important Indifferent More Important Most important
Reputation and Expertise of the Team
Recommendation by your doctor (GP)
Recommendation by other (patient group/ family members/ friends)
Opportunity to access to new treatments
The time spent on trial procedures and visits
Ensured privacy and confidentiality
Opportunity to improve own quality of life
Opportunity to improve own survival
Opportunity to improve the health of others/ Contribute to Health
Reimbursement of travel expenses

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* 7. What would make you withdraw your consent or decline your participation in a trial?

  Not important at all Less important Indifferent More important Most important
Severe toxicities
Extra tests (biopsies, scans etc)
Inconvenient traveling to the trial site
Having to take time off work
Dedicating less time to family and friends/ hobbies
Lack of motivation by your doctor
Lack of motivation by others (patient group/ family/ friends)
Costs

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* 8. How would you feel about the following statements:

  Not comfortable at all Not quite comfortable Indifferent Quite comfortable Very comfortable
Completing Quality of Life questionnaires on site, while waiting for an appointment with the team
Completing Quality of Life questionnaires at home- electronic form
Completing Quality of Life questionnaires at home- paper form that would be posted back to the site
Report treatment symptoms/ toxicities through a mobile application
Have blood tests every 6-12 weeks for monitoring of response to treatment
Have scans every 6-12 weeks
Participation in a clinical trial where treatment options are tailored to your tumors
Participation in a clinical trial where the first treatment is not determined by choice (patient or doctors) but is randomized
Ask your consultant Oncologist to discuss about participation in a clinical trial
Discuss with your patient group/family/ friends about your participation in a clinical trial

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* 9. Have you ever been asked to participate in a clinical trial?

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* 10. Please write here your experience with your rare cancer here. What would you expect from a clinical trial that you would participate in?

We would like to thank you very much for taking the time to participate in our survey.

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