Apply to access deidentified data from the Registry or to create a survey for Registry members.
A window into real-world lung cancer data
The Lung Cancer Registry offers researchers and healthcare professionals a window into real-world lung cancer data. People living with lung cancer, survivors and their caregivers offer their experiences with diagnosis, biomarkers, treatment, side-effects, quality of life and other survivorship issues in a longitudinal format, allowing researchers to move beyond clinical trials and see trends as they are happening. Researcher searches can be saved, allowing easy repeat access and data reporting.
Frequently Asked Questions
Who is considered a researcher?
Researchers may include, but are not limited to, academic or nonprofit researchers or companies conducting retrospective studies, which are studies that analyze data after it has been collected, or conducting research and/or clinical trials on new therapies.
Is Registry access free for researchers?
There may be a fee for service or research costs that will be determined upon application approval.
Can studies in the registry be IRB reviewed and approved?
All Registry research surveys are IRB approved and all consent required are collected within the registry. Researcher conducting their own 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-approval. When you apply, you must state whether you will seek IRB-approval.
How can I search and view the data?
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 firstname.lastname@example.org.
- 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.
What are the terms and conditions for using the Registry data?
Any use of the online access is subject to the Lung Cancer Registry Terms and Conditions and the Professional Access Terms and Conditions.
Use of the Lung Cancer Registry must be acknowledged in any publications or presentations arising from registry use.
How do I submit a proposal for including a survey in the Registry?
Proposals for new studies should contain the following information:
- Study title
- Study Design type
- Description of study and agent or procedure being studied
- 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)
- gov identifier (if applicable)
- What is the population size needed for the study?
- Does the study require IRB approval?
Proposal requests require in-depth discussion with Registry staff. Email email@example.com or call 650-598-2857 to make an appointment.