ABOUT THE SURVEYThe findings in this document reflect responses from patients and care givers to a survey conducted by Center for Information and Study on Clinical Research Participation (CISCRP) in collaboration with TransCelerate BioPharma Inc., Clariness and CenterWatch. TransCelerate commissioned and CISCRP conducted this 52-question patient survey in the Fall of 2016 within patient/caregiver communities. A total of 3,045 people responded. Participants represented 36 countries across North America, Latin America, South America, Europe, Asia Pacific and Africa. Four countries (US, Canada, Germany and Australia) contributed more than 250 responses each. Survey respondents self-identified as patients (73.8%), caregivers (7.6%) or ‘other’ (18.6%). Survey results are based on a convenience sample and as such, findings may not be representative of the opinions of the entire population.

Copyright © 2017 TransCelerate BioPharma Inc. All Rights Reserved.

Find out more about TransCelerate’s proposals to meet patient preferences for clinical trial information:Improving Investigative Site Contact Options on Clinical Trial Registries: Making it Easier for Patients to Find Clinical Trials http://bit.ly/2hLUq3S

Improving Information Exchange with Clinical Trial Participants: A Proposal for Industry http://bit.ly/2f5vHGe

Clinical Trial Registry of the Future Proposal and Proof of Concept http://bit.ly/2AnH1qH

If you (or the person you care for) were to participate in a clinical trial, what information would you want after the clinical trial ends?

The majority of patients want their lab/test results

83%general results of the clinical trial

80%the name of the drug when approved

71%whether they received the study drug or placebo

68%whether the drug will be approved in their country

62%

Want to know:

‘who to contact /contact information of the medical center’

76%

‘what to do in case of an emergency’

71%

If you (or the person you care for) decided to participate in a clinical trial, what information would you want before the clinical trial begins?

Patient respondents :

‘want their own information (test or lab results)’

81%

want to know ‘the activities to expect during their next visit’

71%

If you (or the person you care for) were to participate in a clinical trial, what information would you want during the clinical trial?

What is important for you to have or know before seriously considering clinical trial participation?The Top Four desired pieces of information include:

‘Knowing the potential risks and benefits of the study’

81%‘Knowing the number and length of visits to the clinical trial location that would be required’

67%‘Knowing the medical tests required and/or other activities involved with each visit to the clinical trial location’

67%‘Knowing that my health and treatment record will be shared with me after my participation in the trial (e.g. my personal results)’

66%

If you found a clinical trial appropriate for you (or the person you care for), would you contact the clinical trial location directly?

72%3%

25%

Yes

Patients say:

No

Not sure

Would you discuss clinical trial participation with any of your doctors or healthcare professionals before contacting a clinical trial location directly?

56%23%

21%

Yes

Survey participants say:

No

Not sure

What would you like to discuss with your doctors or healthcare professionals prior to contacting a clinical trial location directly?

risk associated with participation in the clinical trial

65%how participation in the clinical trial may benefit their overall health

62%

Top discussion points with HCPs:

How do you search for information about clinical trials?

of patients use a ‘general internet search’43%

How interested would you be in registering your contact information so you can be informed when a clinical trial becomes available that is appropriate for you?

are ‘somewhat’ to ‘very’ interested

92%

Patient Preferences For Clinical Trial Information

What Do Clinical TrialParticipants Want?