Study Consent

What is the study about?
You are being asked to participate in a research study about the experiences of symptoms and treatment side effects among those with metastatic breast cancer. The goal of this survey is to better understand your experience with symptoms and treatment side effects, and the impact that these experiences have on your life. You are being asked to take part because you have been diagnosed with metastatic breast cancer.


Do I have to participate?
No, you do not have to take part in this study. Participation is voluntary. Your decision will not affect the services you receive from the Cancer Support Community (CSC). If you choose not to take part in the study or withdraw, you will still be able to receive any services provided by the Cancer Support Community. Refusing to participate or withdrawing will not involve any penalties or loss of benefits to which you are entitled.


What happens if I say ‘yes’?
If you say yes, you will take part in an online survey to answer questions about pain, pain management, nausea, and the cancer experience. The information provided from survey responses will be used to help CSC understand how symptoms and treatment side effects impact the lives of those with metastatic breast cancer. The survey should take approximately 30 minutes to complete. Your participation in this study will end at the conclusion of the survey. You can stop answering the survey questions at any time with no penalty. Your alternative to taking part in this study is to choose not to take part in the study.


What will this cost me and will I get paid to participate?
There is no cost to take part in the survey. If you complete the survey, you can choose to be entered in a random drawing for one of several $50 Amazon gift cards. A valid email is required to participate in the gift card drawing.


What is the benefit of participating?
You may not receive a direct benefit from being in this study. Your participation will help improve understanding of symptoms and treatment side effects among people with metastatic breast cancer, which could help expand knowledge surrounding side effect preferences and treatment decision-making.
Is there any risk to participating in the study?
It is possible that you may find answering some of the questions upsetting. You don’t have to answer any question that you don’t want to answer. You can choose not to take part or leave the study at any time without penalty. In the event you should need social and/or emotional support, Cancer Support Community has a toll free helpline, which you can access over the phone at 888-793-9355, and free informational resources, which can be accessed online at www.cancersupportcommunity.org.  There is also a minimal possibility of loss of privacy or confidentiality.
 

Could I be removed from participating in the study?
You will be removed from the study if is determined that you do not meet the eligibility requirements. You must be at least 18 years of age with a metastatic breast cancer diagnosis and be able to communicate in and understand English.


How will my identity be protected?

There is a minimal possibility of loss of privacy or confidentiality. However, research records will be kept private according to all local, state, and federal laws. Your responses to survey questions will be kept secure and confidential. Your responses are completely anonymous. No identifiable information will be collected about you, with the exception of your email address if you choose to be entered in the gift card drawing. Only trained members of the research team will be able to access this email information. Name and other personal information collected if selected for a gift card will not be used in a way that anyone outside of the research team could identify you. Your email will be used only to send a gift card for your participation. After data collection and gift card distribution are complete, email addresses will be deleted and replaced with a random code. The results of this project may be published in scientific journals or presented at professional medical or psychological meetings; however, names will not be collected or used. The Institutional Review Board (IRB) and other regulatory agencies may also have access to study records.
Who is conducting the study?
The study is being directed and managed by the Cancer Support Community’s Research and Training Institute and sponsored by Charleston Laboratories, Inc.


What if I have questions about the study or my rights as a research participant?

If you have any questions about this study, or if you feel like you have been harmed by taking part in the study you should contact the study lead, Alyssa Jaisle, PhD, at 267-295-3005 or email her at ajaisle@cancersupportcommunity.org.

If you have questions about your rights, would like to offer input, or have any complaints that you feel you cannot take to Dr. Jaisle, you may call an impartial reviewer, Ethical & Independent Review Services (E&I) IRB at 1-800-472-3241, or email at subject@eandireview.com. E&I is a group of people that looks out for the rights and welfare of research participants.

 
This makes sense to me, so what do I do now?
If you agree to take part in this study, you will need to provide consent. Please contact CSC to ask questions if you have any questions about taking part in this study prior to consenting. If you agree, please print a copy of this for your records.

Question Title

* 1. By clicking “YES” below, you agree to take part in this research study and continue to the survey.

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