EGFR-positive lung cancer is a type of non-small cell lung cancer in which a gene mutation, or change,  leads to an overactive EGFR protein, fueling the growth of cancer cells. While there are currently FDA-approved targeted therapies to treat EGFR-positive lung cancer, inevitably the cancer cells become resistant to the treatment and it stops working. Thus, there is a huge unmet need for additional treatment options for EGFR-positive lung cancer patients.

I am an EGFR-positive lung cancer patients and co-founders (along with six others) of The EGFR Resisters, a grassroots patient-driven group dedicated to improving outcomes for people with EGFR-positive lung cancer by accelerating research. While there have been incredible strides in lung cancer research since I was diagnosed in 2009, it hasn’t all been specific to EGFR lung cancer—we need more treatment options for EGFR-positive lung cancer patients! Our goal is to make EGFR-positive lung cancer a manageable chronic disease…until we find a cure!

Currently, The EGFR Resisters and LUNGevity Foundation are interested in systematically understanding the treatment experience of EGFR-positive lung cancer patients. We are fielding a longitudinal study to understand the lived experience of EGFR-positive lung cancer patients (or their caregivers). Our goal is to collect:

1. Data on treatment history that can be analyzed to catalog what treatments patients are receiving in the real-world setting 
2. Demographic data and data on exposure to risk factors  to better understand both the cause as well as response to treatment 
3. Quality-of-life-related information to understand how patient needs evolve along the treatment continuum

The data from this study will be open source: clinicians and researchers will have access to this data to better understand the unmet needs in the community and research. The data will also identify new avenues of translational research to better understand disease history that may contribute to mechanisms of drug resistance.

The first study of its kind, this important endeavor will bring us closer to answering the critical question: How can we develop the next tool in the EGFR toolkit—so that EGFR-positive lung cancer patients have access to new therapies and continue to live long, healthy lives?

We need your help! The EGFR Resisters members are committed to raising funds for research to improve outcomes for EGFR-positive lung cancer patients.

LUNGevity Foundation is a 501(c)(3) nonprofit organization. Your contribution is tax-deductible to the full extent provided by law.