WE NEED YOUR INFO: Take part in our Longitudinal Survey of ALK+ Cancer Patients

More participants = more data = better research = more life!
We invite you to complete a patient survey/registry specific to ALK-positive lung cancer. This is an IRB approved professionally study conducted by researchers at University of Washington and paid for by ALK Positive Inc. All data is de-identified, and will inform oncologists, researchers, patients and advocates. The study launched October 6, 2022. Our target is at least 1000 participants! and so far 412 people have joined the ALK-positive Registry — from 38 different countries.

REGISTER HERE: Longitudinal Survey of ALK positive patients

The researchers appreciate your time and effort in answering all the questions - the more data collected, the more accurate the conclusions that can be drawn.

If anyone has any comments/ queries/ suggestions regarding the registry/ survey, please write to alkpositivelungcancer@gmail.com

This research project aims to run a longitudinal survey (meaning survey at multiple points in time, not just one time), to help understand previous experiences of diagnosis, treatment, and surviving lung cancer, and follow patients up over time to examine factors associated with patient-centered outcomes. We are asking that you (the patient OR caregiver) complete the survey forms, and subsequent survey forms (every six months).

It will also create a registry to identify and recruit patients for future research studies.

This research has real potential to lead to improved outcomes (through better care and treatments) for ALK-positive cancer patients worldwide. The project is led by ALK+ lung cancer survivors/ care-partners passionate about diagnosis, treatment, and survival experiences for all patients.

November is Lung Cancer Awareness Month and is a perfect time for you to share about the survey with other ALK-positive lung cancer patients.

Please click this link download two PDF files (a flyer, and project information), and forward them to fellow patients, and to your own oncologist, so that they can spread the word to more patients and oncologists.

Thank you,

- ALK Positive Registry Committee