If the iConquerMS Kids & Teens initiative ends, ACP may retain your records but will no longer distribute them to researchers. Any data that had been shared for research cannot be retrieved from the researchers.
FAQs About Your Involvement
If the iConquerMS Kids & Teens initiative ends, will my records be destroyed?
How does iConquerMS Kids & Teens ensure my private medical information remains secure?
iConquerMS™ Kids & Teens takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only a very limited number of authorized personnel at ACP will have access to your contact information, and this information will never be attached to the health information shared with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed.
In terms of data security, the iConquerMS™ Kids & Teens Project Team takes industry-standard physical and electronic technical precautions to protect the information you share with iConquerMS™.
There are risks associated with sharing any health information; view the informed consent statement for more details about the risks of this study. iConquerMS has established policies and processes that are consistent with current standards to minimize these risks and protect your health information.