Data Privacy and Confidentiality
If you decide to join the research registry, you will be asked to complete a brief survey about your health history and provide some contact information so we can reach you in the future.
Your personally identified information will be kept confidential as required by law. Federal Privacy Regulations provide safeguards for privacy, security, and authorized access. Every effort will be taken to protect your information, including:
1. Electronic information will be saved as password encrypted files and stored on a secured server behind firewalls.
2. If applicable, paper surveys and other study paperwork will be stored in locked file cabinets, which only the study's principal investigator and approved research staff can access.
3. Data collected through the Vibrent platform/app and accelerometer will be stored securely on commercial databases.
Except when required by law or for your care and safety, you will not be identified. The results of future research studies conducted using your information in the registry may be published in scientific journals or presented at medical meetings, but you will not be personally identified.
By consenting to join, you authorize the Community Oncology Registry (CORe) to use and/or share your health information only with those who are approved to conduct, monitor, and oversee research. Researchers may have to give your information if study is audited, or if the information is required by the Food and Drug Administration (FDA). The researchers cannot prevent you or others, for example a member of your family, from sharing information about you or your involvement in this research. Individual trial sponsors or investigators are responsible for the safety, science, and accuracy of any study listed in the CORe.
No, the information you provide will not be shared with your insurance company.
No, we will never sell any of your information.
No, you can skip any questions that you do not wish to answer that may reveal your personal health information. You may also change your mind and revoke (take back) the right to use your protected health information at any time. If you decide to revoke this authorization, you must write to the study team. Please address this request to [email protected] or 640-867-0270.
No, taking part in this research registry is unrelated to the type and quality of health care you receive.
This research registry has been approved by an institutional review board (IRB). To ask questions, express concerns, report problems, obtain information, or offer input about your rights as a research participant, you may contact [email protected] or 640-867-0270.
The technology utilized by the CORe has been funded and validated at large scale by the National Institutes of Health (NIH)
The CORe will be used to match patients with clinical trials that may be related to cancer screening, prevention, early detection, treatment and/or survivorship using investigational and/or FDA approved drugs, therapeutics and medical devices.
If you have questions please contact us.
Our team is available
Monday - Friday
8:00AM - 5:00PM
Become a participant in the Community Oncology Registry (CORe)