Frequently Asked Questions

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Researcher FAQ's

More data. More survivors.

It takes whole communities to help people living with medical conditions lead healthier and happier lives. The more information collected about lung cancer, the closer we can get to finding treatments that work.

Decision-makers in research, industry, policy, and healthcare settings are actively seeking robust sources of patient data to inform their work. The GO2 Foundation for Lung Cancer founded the registry as a global tool ideally positioned to capitalize on this growing interest by building a high-impact source of patient information. Registries give patients a direct means to participate in the care continuum, providing their input and insights to help focus priorities and improve outcomes for patients.

Healthcare professionals, clinicians, nurses, and researchers.

Researchers and clinicians can join and access global patient reported lung cancer data. You can work to advance patient-powered research. Search, save and explore the data. Submit proposals for research, conduct research, and publish.

De-identified data gathered from self-reported participant profiles is made available to the Lung Cancer Registry community of registered participants, families, healthcare providers, advocacy organizations, industry supporters, and researchers. To protect the privacy and rights of our participants, all data will be de-identified. For a list of current “Lung Cancer Patient Survey” study questions, click this link.

The registry studies can be IRB approved and all consents required can be collected within the registry. Studies can also be granted IRB waivers under Non-Human Subject Research guidelines, and studies can be done in the registry that do not go through an IRB.

Online access to registry data requires registration. Most applications are processed within two weeks. To apply for access, please complete the form “Request for a Professional Account”. If approved, access to registry data is provided at no cost. If you are submitting a request or study proposal that requires additional information or functionality, additional costs may be incurred, and a conversation will be required to determine pricing.

It is a research tool for YOU. Researchers and clinicians can register for a professional account and access the de-identified data.

  • View, search, save searches, explore de-identified data, and query any combination of data elements using the research portal online search tool.
  • Learn how patients report their lung cancer history from diagnosis through treatment and more. Your research and the data can lead to identifying patterns, which can lead to better understanding of the disease, diagnostics, and treatments to ultimately bring about better outcomes.
  • Apply for an account here: professional account registration
  • For export of the patient-level data, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..
  • De-identified data: In the output, registry participants will be referred to by a unique identification number. No personally identifying information or contact information for any registry participants will be visible or made available.

  1. Proposals for new studies should contain the following information:
    • Study title
    • Phase
    • Study Design type
    • Description of study and agent or procedure being studied
    • Hypothesis
    • How will the Lung Cancer Registry data be used to answer your hypothesis?
    • Funding source
    • Site(s) where study is being conducted (single center or multicenter)
    • Lead institution name
    • Study location: city, state, or nationwide
    • Study time period (beginning and end date)
    • identifier (if applicable)
    • What is the population size needed for the study?
    • Does the study require IRB approval?
  2. Does your study need additional data not currently captured within the registry? (See current survey questions here)
  3. If yes, what other data/information would you wish to collect?
  4. E-mail your proposal to This email address is being protected from spambots. You need JavaScript enabled to view it..

If you have questions or would like more information, please contact us via email at This email address is being protected from spambots. You need JavaScript enabled to view it. or call us at 650-598-2857.