What do patients that go only a short time before tumor progression have in common?

What do patients that have many years before tumor progression have in common?

What do patients experiencing a lot of problems with adverse effects with ALK TKIs have in common?

Is exercise associated with cancer outcomes, or quality of life?

Is diet associated with cancer outcomes, or the adverse effects of treatment?

Do any supplements, or cannabis, make a difference in cancer outcomes, how we feel, or adverse effects we experience?

Which TKI’s are associated with favorable outcomes for specific mutations, in real life, as opposed to in the laboratory?

What is the typical diagnostic time course, from symptoms to lung cancer diagnosis and then an ALK-specific diagnosis?

What is the demographic distribution (such as age, gender, and ethnicity) for patients with ALK positive?

How is the treatment course for patients changing over time?

How frequent is Local Consolidative Treatment (LCT), and when and where are patients receiving it?

How does LCT affect the course of cancer, and what side effects does it have?

How frequently is chemotherapy given with a TKI, and when and where are patients receiving it?

How does chemotherapy affect the course of cancer, and what side effects does it have?

What environmental factors were patients exposed to, that they think contributed to getting ALK lung cancer?

What are the characteristics of patients who participate in clinical trials?

What are the patterns of order, or sequence, treatments are currently given?

Can we help researchers find patients to participate in their research studies?

How does TKI dose reduction affect the side effect profile and course of cancer?

The researchers, clinicians, and patients, do not yet have the answers to these, and hundreds of other, questions about ALK+ lung cancer!!

The ALK Positive Lung Cancer Registry and Survey is a study that was launched in October 2022, with the purpose of helping provide real-world answers to all those questions. It is an IRB approved study conducted by University of Washington, but funded and driven by the ALK Positive organization. There are already almost 1,000 patients registered, and over 700 have answered multiple survey forms. However, the researchers will need thousands more global participants to answer most of these questions!!

By donating a few hours of your time, at your convenience, you can help provide answers to these questions, that can lead to improvements in the length and quality of our lives. This is a multi-year study, from which many research papers are expected to be published, to help researchers and clinicians worldwide provide better care and superior treatments. The budget for this study is approximately $300,000 - $400,000/year, and we are seeking funding from industry, and their advice, so that we get the information that will make a difference. Funding from industry will help enable the surveys to be translated into other languages (Italian, French, German, and Hindi, to start), and pay for the researchers to perform the extensive analysis required, write the papers to be published in respected journals, and travel to conferences to present their findings. The first research paper is already being written!

Participating is easy – you can register in less than 5 minutes.

The survey forms can be started at any time, and partially completed forms can easily be saved in the survey platform, to complete later, when you have time. It is important you provide information from the beginning of your ALK journey and update it every 6 months, because understanding the changes patients experience over time is of the utmost consequence!

Click here to register, or copy and paste https://redcap.link/alkpositivesurvey into your web browser. If you have already registered, please check your email (you may need to look in junk mail folder) for reminders to complete any surveys available. Finishing all the surveys available for you is as important as starting the surveys.

If you ever have any questions about the survey or forms, send an email to ALKpositivelungcancer@gmail.com

Go Research!! Our lives depend on it!!

The ALK Positive Lung Cancer Registry and Survey Need You!!