Taking aim at lung cancer

United. Cure-driven. Determined.

United to create a lung cancer registry

We are creating a publicly accessible clinico-genomic NSCLC cancer registry to spur game-changing research.

Our lung cancer patient coalition is committed to advancing critical research across all biomarkers.

This 30,000 patient registry is key to understanding and advancing the development of novel, cure-driven therapies for patients.

Modern research uses the web to bring people together to share their personal health and genetic data with researchers -- regardless of how close they live to a clinic or research facility. MJFF Fox Insight cohort is an example of this.

Lung cancer registry initial steps

Launch a study to recruit 30,000 patients

Collect patient surveys

Provide DNA for germline analysis test

Request medical records

Request tumor data

Share data with researchers and patients

Sub-studies

Some sub studies could be run on the data collected, and some of which would require additional data collection, such as obtaining imaging data, deeper sequencing of tumor samples, or new blood draws from patients, or creation of a clinical trial matching tool. What sub-studies would you find most interesting?

Cohort management

On-going management of the cohort and new sub-studies will need to be addressed. What is the most efficient way to manage this in the lung cancer patient foundation landscape?

Next steps

Engage patients and researchers

Pilot study to enroll 50-100 patients to optimize ways to access tumor genomic data

Launch study to begin broader enrollment (30,000 patients)

Data made accessible to researchers and sub-studies launched

Long-term maintenance of study cohort and continued launching of sub-studies

Join our efforts

If you would like to have a role in our registry campaign or get updates, please sign up below.

Thank you! We will be in touch soon.

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