FAQs

To join the Registry, you must be: 

• At least 18 years old, and  
• Diagnosed with lung cancer, or a caregiver of a person with lung cancer (whether they are currently living or passed away)

Adults who have not been diagnosed with lung cancer but might be at higher risk because of their type of work (firefighters, miners, military), lifestyle (history of smoking), or exposure to radon, 9/11 dust, or wildfires may also join the Registry.

Your medical information can play an important role in improving lung cancer care and research. By sharing your experiences, you help researchers and doctors better understand the disease and how to treat it. For example, your information could help with: 

• Understanding what causes lung cancer – Lung cancer can be caused by changes in genes, certain markers in the body called biomarkers, or things in the environment. Your data helps researchers study these causes more closely. 

• Finding the most effective treatments – Because lung cancer is linked to biomarkers, researchers are learning which treatments work best for certain groups of people. Your medical information supports this effort. 

• Managing side effects – Everyone reacts to treatments differently. New studies are looking at how treatments affect quality of life and cause side effects. Your experience helps doctors and patients know what to expect and make better decisions about care. 

• Improving survivorship – More people are living longer with lung cancer. Your experiences help researchers understand how to support survivors—looking at long-term side effects, sexual health, and other challenges. This helps improve care, communication, and overall well-being.   

Visit the registration page and answer a few short questions.

Absolutely. You can opt out of the Registry at any point through your profile page.

The Lung Cancer Registry takes your privacy very seriously. Only official Registry staff will have access to your identifying information, such as your name and email address, via a password controlled secured database. Only approved researchers have access to de-identified data, after being vetted by Registry staff.

Read more about privacy and security

No. Although Registry data might be used by researchers to add to or complement clinical trial data, clinical trials are very distinct research studies and are separate from one another and from the Registry.

Learn more about clinical trials

Your username is the email address or phone number you used when creating an account.

To change your password… 

1. Go to the sign in page. 
2. Click “forgot password?” 
3. Enter the email address (or phone number) that you used when you created an account. 
4. Check your email (or phone number) that you used when you created an account.
5. Enter the code into the box. 
6. Then you will be able to change your password. 

1. Log in to your account. 
2. Click “profile” on the left menu panel. 
3. Scroll down until you see “log in information.” 
4. Under the section named “password,” click on the words “change your password.” 
5. Enter the new password 2 times.
6. Click “save.” 

1. Log in to your account. 
2. Click “surveys” on the left-hand side.
3. Choose “view.” 
4. You will see a list of all your completed surveys.
5. Choose a survey and see all your past answers.