The ALK Life Study, a global, patient-led observational registry and longitudinal survey originally created and supported by ALK Positive, Inc. for patients with ALK-positive (ALK+) non-small cell lung cancer, has published its findings in JCO Global Oncology.
The study tracked the natural history of the disease, diagnostic timelines, and real-world treatment patterns over time. Led by patient advocate Dr. Colin Barton and conducted by Dr. Morhaf Al Achkar alongside an international team of researchers, this landmark study analyzed data from 1,111 patients across 71 countries.
The results provide compelling real-world evidence that the encouraging outcomes seen in clinical trials are also being observed in everyday clinical practice.
Key Findings from the Registry
- Unprecedented Disease Control: Over 60% of all participants remained on their very first ALK inhibitor at the time of analysis, demonstrating encouraging long-term real-world treatment durability.
- Superiority of Modern TKIs: Second- and third-generation targeted therapies, such as alectinib, brigatinib, and lorlatinib, were associated with the longest treatment durations.
- Fewer Side Effects: Modern inhibitors showed significantly lower rates of discontinuation due to toxicities compared to older, first-generation drugs like crizotinib.
- Clear Treatment Sequencing Globally: Alectinib followed by lorlatinib was a commonly reported real-world treatment sequence.
- Bridging Real-World Evidence and Clinical Trials: These real-world findings strongly complement recent landmark clinical trial data. Notably, the latest CROWN trial updates show that 55% of patients treated with first-line lorlatinib remain progression-free after seven years.
Together, the ALK Life Study and the CROWN trial provide important evidence that modern ALK inhibitors are delivering meaningful, long-term disease control in clinical practice.
Furthermore, this milestone underscores the profound impact of patient-led research initiatives and patient participation in advancing our understanding of ALK-positive lung cancer.
The findings also highlight the lasting impact of research previously supported by ALK Positive, Inc. Through patient advocacy, educational programs, and fundraising, our community helped make this research possible. As ALK Positive concluded its involvement with the ALK Life Study, these published findings represent a meaningful outcome of that support and the contributions of patients worldwide.
To read the full published paper, visit: https://ascopubs.org/doi/10.1200/GO-25-00574
Thanks to Colin Barton for creating this program and for contributing this posting.
