Researcher FAQ's

Why Join The Lung Cancer Registry?

The Lung Cancer Registry and Clinical Research

Decision makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform their practices. The Bonnie J. Addario Lung Cancer Foundation (ALCF) and American Lung Association (ALA) Registry is 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, leveraging their input and insights to focus priorities and improve outcomes for patients.

Registry Data and Curation

De-identified data gathered from self-reported participant profiles is made available to the Lung Cancer Registry community of registered participants, families, medical care providers and researchers. To protect the privacy and rights of our participants, all data will be de-identified. For list of current study questions click this link.


On-line 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, a conversation will be required to determine pricing.


An Investigator with online access to the de-identified records in the Lung Cancer Registry can query any combination of data elements using the research portal online search tool. In the output, registry participants will be referred to by a unique identity number. No personal identifying information or contact information for any registry participants will be visible or made available.

Terms and Conditions

  • Any use of the online access is subject to the Lung Cancer Registry Terms and Conditions.
  • Any use of the online access is subject to the Professional Access Terms and Conditions.
  • Use of the Lung Cancer Registry must be acknowledged in any publications or presentations arising from the use of the registry.

Submission of Research Proposals for placing Clinical Studies within the Registry

  1. Proposals for new studies should 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 (individual, multi-center); 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. Please see our list of current study questions (link). Does your study need additional data not currently captured within the Registry? If yes, what other data/information would you wish to collect?
  3. E-mail 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 at:

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The Lung Cancer Registry is sponsored by: