What to expect

Participating in the Registry is easy, free, and confidential.  

Registry data can speed the overall pace of research.

The Lung Cancer Registry is a research study created by lung cancer doctors, researchers, and advocates.  

People with lung cancer, caregivers, and those who might be at risk for lung cancer will be offered a series of surveys to complete when you first sign up. Our goal is to improve lung cancer screening, find lung cancer earlier, and make sure that people at highest risk get the support they need. 

Enroll in the Lung Cancer Registry

Follow the simple steps below and contact our team if you have any issues.

 








Sign up for the Lung Cancer Registry. On our website, click the blue “Join Now” button in the navigation. 







Answer eligibility questions. If you qualify, you’ll be shown an informed consent form explaining the Lung Cancer Registry and how your information will be kept safe.








    After agreeing to participate, you’ll complete a brief profile questionnaire. You will then have access to surveys in your dashboard.








    Complete online surveys in your dashboard. The estimated time to complete most surveys is just 5-10 minutes.








    Complete online research surveys. Based on your lung cancer type and stage, you might have the opportunity to complete occasional specialized research surveys. Estimated time is approximately 10-20 minutes.







    Complete additional research surveys. Some participants may also receive shorter surveys every 3 months to update how some information may have changed over time. By completing surveys every few months, the Lung Cancer Registry can see trends in real world lung cancer care.







    Keep in touch. We will notify you when new surveys are added and share updates about research progress or publications.

    Surveys do not need to be completed in one sitting.

    Surprise Zoom call from a friend? Tired from a long day? Surveys can be paused at any point, saved, and completed when the timing is more convenient.

    Who can participate?

    Information may be added to the Lung Cancer Registry by the person with lung cancer or by someone they choose to share information, such as a spouse, child, relative, or friend. If someone else is sharing the information, they must have permission to share the person’s medical records. 

    People who participate in the Lung Cancer Registry must be 18 years of age or older, and fall into one or more of the following categories: 

    • Have been diagnosed with any stage of lung cancer
    • Are/were caregivers of someone diagnosed with lung cancer (living or deceased)
    • Are individuals who are at a higher risk for lung cancer due to other lung diseases, environmental elements, or other risk factors 

    Are you an adult (18+) who is…

    Diagnosed with lung cancer at any stage?
    A caregiver (past or present)?
    At higher risk for lung cancer?

    Tips for quick and complete surveys

    Dummy Item
    Have your medical records nearby and organized by date.

    The Registry allows you to upload and store pictures of scans, medical records, or documents for easy repeat access, like a virtual filing cabinet. You can also see your previous surveys on your profile under “my impact” for reference.

    Regardless of how you store and organize your records, be sure to note what has been entered into the Registry and when. There will be times when you aren’t sure what was noted in the last survey or when a change to your therapy or an off-schedule scan can add confusion about your cancer care timeline. Making notes in your records as you input them helps manage confusion.

    Know if you had biomarker testing, as well as what type of biomarker testing you had (tissue or liquid-based testing), if applicable.

    Comprehensive biomarker testing (such as a lung cancer-specific mutation panel or next-generation sequencing, NGS) is an important part of your diagnosis and treatment. Certain gene changes, such as those in the EGFR, ALK, RET, MET, and KRAS genes, or other biomarkers, such as PD-L1, can affect how well your cancer responds to a given therapy.

    Learn more about biomarkers and testing

    Be very specific about which treatments you are receiving.

    “Chemo” and “immunotherapy” are just labels for the types of drugs you have been prescribed; they are not a drug by themselves. Different types of therapy can even include a mix of drugs – like “chemoimmunotherapy.”

    Be prepared to repeat yourself.

    Unfortunately, doctors, researchers, and even the Lung Cancer Registry ask some of the same questions at different time intervals. There will be times that this feels tedious—we’re sorry. Repetition is, unfortunately, necessary for scientific standards.

    Ask for help if needed.

    Caregivers, family, and friends are always looking for ways to help. Data entry into the Registry is the perfect way to empower the people who love you (giving you extra time to relax).

    If at any time, you are confused by the information presented in a survey or you are unsure about how to enter your data, we are here to help. Contact registry@go2.org.

    If you have questions about your diagnosis or treatment, want to connect with other lung cancer survivors, or are just feeling overwhelmed by your lung cancer experience and want to talk, we are here to help.

    The GO2 HelpLine team members are available Monday – Friday, 9 am – 5 pm (ET). Contact a compassionate and skilled team member today at 1-800-298-2436 or support@go2.org.