Privacy & Security
Your data is confidential and protected. The information you submit to the Registry is stored in a secure, password-protected database.
The goal of the Registry is to share medical information about your disease with researchers, while protecting the privacy of participants.
Third parties may seek access to deidentified data in the Lung Cancer Registry. Third parties may include, but are not limited to, academic or nonprofit researchers or companies conducting retrospective studies, which are studies that analyze data after it has been collected, or conducting research and/or clinical trials on new therapies. Third parties will only be granted access to deidentified data in the Registry upon review of a detailed proposal and approval by the Lung Cancer Registry. Submissions require a research proposal, application and budget. Approvals are based on the scientific quality and validity of the study as discussed in the application. Data requests for studies related to lung cancer are NOT guaranteed approval, and all approvals are documented. Third parties seeking access to registry data must demonstrate evidence of IRB approval or exemption.
No individual, identifiable research results will be returned to you or your doctor.
The Lung Cancer Registry will notify the Registry members about research results that have been published from the Registry, but these results will not be able to be traced back to you. If research results are published in a research publication or in conjunction with an educational conference, your name and other personal information will not be given. See the Resulting Data & Discoveries page to learn more about how the Lung Cancer Registry has moved research forward.
Representatives from our IRB may sometimes inspect study records to be sure that the Registry is being protected according to regulations and policies. However, these individuals are required to keep all donor information confidential.