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CSN Survey

Friday, July 19, 2019 - 7:00pm
Your announcement.: 

The American Cancer Society’s Cancer Survivors Network is conducting a survey of active CSN members to help us learn about the impact of online health communities. Members who have been active on the site recently will receive an email with a link to the survey, as well as a link to opt out of the survey. Your participation will help us to understand the benefits of using the Cancer Survivors Network and to improve the experiences of the thousands of people who visit this community.  

 If you agree to participate, you will be asked to fill out an online survey at three separate times over the next nine months. The questionnaire takes about 15 minutes to complete.  The email invitation will be sent on Monday, 7/23/2019. 

 This research is a partnership between ACS and investigators at Carnegie Mellon University and is funded by the US National Institutes of Health. 

 Thank you in advance for your participation.  

American Cancer Society’s Cancer Survivors Network® (CSN) Survey Consent Form 

This is a study of the benefits of using CSN intended to inform efforts to improve the experiences of CSN members. This study is conducted by the American Cancer Society, Carnegie Mellon University and the University of Pittsburgh. 


You will be asked to fill out an online questionnaire three times over the next nine months. The survey will ask about your use of CSN, your health, ways you cope with cancer, your social support, your mood and other topics. It takes about 15 minutes. To determine how using CSN influences health outcomes, the research team will compare participants' use of CSN with their answers on the survey. 

Participant Requirements 

Participation in this study is limited to CSN members age 18 or older who are residents of the USA. 


The risks and discomfort associated with participation in this study are no greater than those in completing other online surveys. You are free to skip questions that make you feel uncomfortable. If you need cancer information or referral to local services, you can contact the American Cancer Society at 1-800-227-2345, 24 hours a day and speak to a trained Cancer Information Specialist. 


You will not receive direct benefit from participating in this study. The information you provide may help improve CSN and produce knowledge about the benefits of online health support groups. 


Compensation & Costs 

There is neither compensation nor cost to you if you participate. If you decide not to participate, this will not affect any services you receive from CSN. 


All responses will be kept anonymous, and your information will be held in strictest confidence, as defined by the CSN terms of service. All study data are stored on a secure, password protected server and kept confidential to the extent possible by law. Personal identifiers (e.g., your name, email address, and IP address) will not be used in the study. Published findings, reports, presentations or other shared information will not contain information that can be linked to individual CSN members. 

Right to Ask Questions & Contact Information 

If you have any questions about this study, you should feel free to contact one of the following. 

 Hillary Grice 

Digital Program Manager 
American Cancer Society 



Robert E Kraut 

Herbert A. Simon Professor Emeritus of Human-Computer Interaction 

Carnegie Mellon University 

412 268-7694 



If you have questions about the ethics of this study, you should contact the Research Regulatory Compliance Office at Carnegie Mellon University. Email: IRB-REVIEW@ANDREW.CMU.EDU or Phone: 412-268-7166. 


 By completing the survey, you are agreeing to participate in this study. 


American Cancer Society, Inc. 
250 Williams St. 
Atlanta, GA 30303 
CANCER.ORG | 1.800.227.2345 

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Research study, clinical trial, focus group,etc (Requires IRB review and certification. See here for guidelines.)
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