Have You Heard About Project PRIORITY?

On April 9th of this year, the EGFR Resisters launched a brand-new comprehensive study called Project PRIORITY in collaboration with the LUNGevity Foundation. PRIORITY stands for Patient Reported Initiative On Resistance, Incidence and Treatment StudY.  The study is focused on understanding the experiences of EGFR-positive lung cancer patients with the aim of identifying major unmet research and treatment needs.

Who are the EGFR Resisters?

In case you don’t know about the EGFR Resisters, let me give you a quick summary. The EGFR Resisters is a patient-driven group founded in August of 2017 with the goal of focusing on improving outcomes for all those with EGFR+ lung cancer through supporting patients and caregivers, increasing awareness and education, improving access to effective diagnosis and treatment, and accelerating and funding research.

Six patients, including myself, and one caregiver were the original founders of the EGFR Resisters and from that initial group of seven, we have increased in size in less than two years to over 1,200 patients and caregivers in more than 30 different countries. Until the launch of Project PRIORITY, we have been gathering basic demographic, diagnostic and treatment information about our members through a very short survey posted on our closed Facebook group and our website.

Participating in Project PRIORITY

We have now closed that short survey and are asking all EGFR+ patients or caregivers to participate in Project PRIORITY by filling out our new online survey. We hope that our entire membership completes the survey, regardless of whether or not individuals previously answered our Facebook-based survey questions. Project PRIORITY is open to EGFR+ patients and caregivers living anywhere in the world. We estimate that the survey will take 35-40 minutes to complete.

To participate in Project PRIORITY, please complete the survey - HERE.

What makes Project PRIORITY different?

As opposed to our original survey, Project PRIORITY is IRB-approved. What is an IRB and why is this important? “IRB” stands for Institutional Review Board and all studies involving patients should be reviewed by an IRB prior to launching in order to protect patient confidentiality and other important issues.  Getting our project IRB approved was a big step and ensures that the survey platform is secure and compliant with United States security laws as well as with the recent European Union General Data Protection Regulation (GDPR) requirements. All information provided through the survey will be stored in an online cloud server that has met the safety and security requirements to minimize breach of confidentiality.

Having IRB approval gives Project PRIORITY true research status. We can now analyze the data we gather and publish it at conferences or in medical journals to show the unmet needs of EGFR+ lung cancer patients and drive important questions related to diagnosis, treatment, and resistance. All information collected through this project will be analyzed in aggregate and de-identified, so it will be impossible to distinguish an individual respondent’s identity from responses.

Long term plans for Project PRIORITY

We plan to collect information for Project PRIORITY for two years. At the end of the initial survey in the above link, participants can provide their email address if they would like to participate in the longitudinal component of the project, involving shorter periodic surveys to update their information over the two years. If you opt to participate in the future surveys, your contact information will not be used or shared with anyone apart from the Principal Investigator of the study, who will use it only to get in touch with you regarding the future surveys. Please note that you can participate in Project PRIORITY without providing your email address for future surveys and this will not disqualify you in any way from taking the initial survey.

We are so excited to have launched Project PRIORITY and are hoping you will be just as excited to participate. The EGFR Resisters hope to make a difference in EGFR+ lung cancer and we need YOUR HELP in order to accomplish this!

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.