Privacy & Security
Your data is confidential and protected. The information you submit to the Registry is stored in a secure, password-protected database.
Our Goal
The goal of the Registry is to learn more about the lung cancer experience and draw connections to improve prevention, diagnosis, care, and survival while protecting the privacy of individuals in the Registry.
GO2 for Lung Cancer uses security measures to reduce the chance of accidentally sharing private information. When you submit information to the Lung Cancer Registry, it will be stored and kept in a secure, password-protected database. This makes sure that the privacy, security, and confidentiality of all personal information is safe and protected, as described in our Privacy Policy.
You are in control of your data
Your personal information will not be shared with anyone outside of the Registry. Participation is completely voluntary, which means that you provide only the information you are comfortable sharing. You may decide to close your account at any time.
You do not have to provide copies of your medical records to participate; however, it is very helpful for researchers to look at your survey responses while also looking at your medical records.
The Lung Cancer Registry platform is ISO 27001 certified, which is the international gold standard for data security, and meets the requirements of the European Union’s General Data Protection Regulation (GDPR), the United States’ Health Insurance Portability and Accountability Act (HIPAA), and the California Consumer Privacy Act (CCPA).
Only Lung Cancer Registry staff can access personal information to contact a person with lung cancer, if necessary. You will only be contacted if you have given us specific permission to do so.
Third-party access
Third parties may ask to see data in the Lung Cancer Registry for approved research purposes. Third parties may include, but are not limited to, educational or nonprofit researchers or companies organizing retrospective studies or studies which look at the information after it was collected. Others may ask for the data if they are conducting research and/or clinical trials on new therapies. Third parties will only be given access to de-identified data in the Registry after submitting an application that has been approved by the Lung Cancer Registry.
All applications should include a research proposal, application, and budget. Approvals will only be given based on the scientific quality and validity of the study, as discussed in the application. Requests for studies related to lung cancer are NOT guaranteed approval, and there will be a record kept of all approvals. Third parties seeking access to Registry data must show IRB approval or exemption.
Only researchers who have specific permissions will have access to the database, but all data they have access to will be de-identified. “De-identified” means that the data does not include your name or other information that would link the data back to you. Research that is published in research publications or discussed at educational conferences will also not include any information that would reveal your identity.
Research findings
The Lung Cancer Registry will let Registry members know about any results that have been published using data from the Registry. These results cannot be traced back to you. If the results of the research are published in a research publication or as part of an educational conference, your name and other personal information will not be given.
The IRB may review study records to ensure that the Registry data is being protected according to privacy policies. However, these individuals are required to keep all Registry information private.
