Explore Resources
We support the creation and sharing of lung cancer research resources.
Qualified researchers can access de-identified data from the Lung Cancer Genetics Study, which collects germline genetic data and patient-reported data from people diagnosed with lung cancer.
For this study, we have collaborated with more than 20 lung cancer advocacy organizations and the 23andMe Research Institute. Please visit the study participant site to learn more about the study and our collaborators.
Questionnaire Data
One-time health and disease questionnaires and longitudinal questionnaires about disease progression, treatments, biomarker testing, and family history.
Germline Genetic Data
Germline single nucleotide polymorphism (SNP) array data from the 23andMe Research Institute’s custom Illumina chip.
Data Privacy
Data are de-identified prior to being stored in a controlled-access database.
998
Participants
74%
Female
48%
Smoked less than 100 cigarettes in their lifetime
Database Application First Steps
To begin the process, complete a short online form and provide a CV.
Have a Data Showcase Password?
If you’ve already completed the Data Showcase Access Request Form, click below to access the Data Showcase. To log in, you’ll need the password that was emailed to you.
1. Request Data Showcase Access
Initiate the data access process by completing a short online form and providing a CV. Individuals who complete this step will receive access to a password-protected Data Showcase with selected summary data to assist with completing a Data Access Request for the full database.
2. Complete a Data Access Request
To apply for access to de-identified, individual level data, please download and complete the Data Access Request and Privacy and Security Questionnaire forms. Email completed forms and requested documentation to data@susanwfoundation.org.
3. Undergo Data Access Committee Review
The study Data Access Committee, including patient research advocates, will review and respond to Data Access Requests within 90 days.
4. Sign Use Agreements
Once a Data Access Request has been approved, the requesting PI and/or requesting PI’s institution must sign a Data Use Agreement and all Approved Researchers named in the Data Access Request must sign an End User Agreement prior to accessing study data. We are not able to accept revisions to these agreements.
5. Create a Lifebit Account and Receive Secure Log-in Instructions
Approved Researchers will receive instructions on how to create a Lifebit platform account, followed by secure log-in details.
6. Abide by Study Policies and Procedures
Approved Researchers must review and follow the policies described in the Publication and Presentation Policy and Data Use Reporting Requirements documents.