Lung cancer patients with mutations in the EGFR gene represent a
significant amount of patients diagnosed with non-small cell lung cancer.
Approximately 10-15% of patients with non-small cell lung cancer in the
United States and 35% in Asia have an EGFR positive mutation. In the U.S., more
than 20,000 people are diagnosed with EGFR positive lung cancer each
EGFR Resisters is comprised of over 1600 members from over 30 countries. Out
of the 65% of members who have provided data, 73% have already
developed acquired resistance to their current EGFR treatment. The types of
resistance mechanisms seen in this community are consistent with results
that have been published from other studies.
We are working to increase the size of our EGFR Resisters community with
the assistance of advocacy groups and medical professionals. Our aim is
to use the strength of our collaboration to drive important research
questions and fund novel research and clinical trials.
Although there has been an increase in progression-free survival in
patients due to EGFR TKI (Tyrosine Kinase Inhibitors, commonly known as TKIs),
patients eventually develop acquired resistance. With each generation of
TKIs developed, more mechanisms of resistance are discovered; therefore
the development of drugs to target resistance mutations and other
mechanisms of resistance are desperately needed.
The EGFR Resisters is a group of people living with and/or personally
affected by EGFR positive lung cancer. The purpose of founding the group
is to build a community of survivors and caregivers to share knowledge,
provide support, and confidentially collect patient data.
We are using a survey to collect information such as patient
demographics, details of lung cancer diagnosis, specific type of EGFR positive
mutation, acquired resistance and mechanism of resistance. Patient data
will be aggregated and analyzed to identify trends such as (but not limited to) commonalities
and differences in mechanisms of resistance.
The goal of the EGFR Resisters is to improve outcomes for people with
EGFR positive lung cancer by accelerating research. Our ultimate
objective is changing EGFR positive lung cancer into a manageable chronic disease.