Informed Consent Statement
The iConquerMS™ Caregivers informed consent statement can be found below. This is the information you are asked to agree to, while registering for iConquerMS Caregivers. For detailed answers to your questions about informed consent, visit our FAQs About Informed Consent page.
It is necessary for you to provide informed consent before participating in any research. The policy below describes iConquerMS Caregivers and what your role will be. Please read carefully to ensure you fully understand the initiative before joining. Taking part in this research is voluntary. You may decide not to participate, or you may leave the study at any time. Your decision will not result in any penalty or loss of benefits to which you are otherwise entitled.
Taking part in this research is voluntary. You may decide not to participate, or you may leave the study at any time. Your decision will not result in any penalty or loss of benefits to which you are otherwise entitled.
If you have any questions, concerns, or complaints or think this research has hurt you, talk to the research team at the phone number(s) listed in this document.
RESEARCH CONSENT SUMMARY
You are being asked for your consent to take part in a research study. This document provides a concise summary of this research. It describes the key information that we believe most people need to decide whether to take part in this research. Later sections of this document will provide all relevant details.
- Someone will explain this research to you.
- Taking part in this research is voluntary. Whether you take part is up to you.
- If you don’t take part, it won’t be held against you.
- You can take part now and later drop out, and it won’t be held against you
- If you don’t understand, ask questions.
- Ask all the questions you want before you decide.
We expect that your taking part in this research until last indefinitely.
The purpose of this research is to enroll adults who are caregivers to those living with multiple sclerosis (MS) into a multiple sclerosis people-powered research network (MS-PPRN), iConquerMS, to enable them to contribute their health and other data. Survey data will be made available to research scientists who are conducting research on MS caregiving, and/or studying MS or similar diseases. Our goal is to use this data to answer questions that researchers and those who are MS caregivers have regarding MS caregiving, and/or MS, including its causes, treatments, and other topics.
If you decide to take part in this research study, the general procedures include accessing a registered-member section of iConquerMS, with a username and password to keep your account private. You will be asked to provide information about your health and experiences of being a MS caregiver by completing online surveys, optionally providing your electronic health records, and optionally participating in activities (like focus groups) to share your experiences with researchers.
The most important risks or discomforts that you may expect from taking part in this research include feeling uncomfortable upon reviewing some of the survey questions and a potential risk of loss of confidentiality.
It is not expected that you will personally benefit from this research.
Possible benefits to others include that the information you provide may help current and future generations better understand MS caregiving, MS, or other similar diseases.
The only alternative is to not participate in this research.