A Real-World Example: ALCF Immunotherapy Survey

The current ALCF immunotherapy survey is an example of how the registry can be used in research with patients in specific subpopulations to help fill in known information gaps. The survey is a research study exploring the side effects patients experience when receiving treatment with immune checkpoint inhibitors, which is a form of immunotherapy.

Research has shown that immune checkpoint inhibitors have provided durable remissions and prolonged survival for patients with NSCLC, but that treatment can also cause a range of unique side effects that need to be better understood for maximal patient benefit. The Lung Cancer Registry immunotherapy survey collects medical information from participating patients including: any side effects that may arise during therapy, the extent to which the patient experienced the side effects, and whether the patient’s quality of life is impacted. The survey results help researchers address the challenges presented. Ultimately, the survey will help foster a better understanding of immune checkpoint side effects, validate a symptom scoring tool, and provide useful information to better inform future patients as they are considering this treatment.