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P2.02-01 ALKFusion and the Unmet Need of Patient-Centric Research

      Background

      Approximately four (4) to seven (7) percent of non-small cell lung cancer (NSCLC) is driven by the ALK transfusion. In the United States, approximately 11,000 people are diagnosed with ALK-positive NSCLC every year. There are an array of treatment options for the ALK-positive patient, and these options have improved overall survival rates in this subset of NSCLC patients. Currently, there are five FDA approved tyrosine kinase inhibitors (TKIs) that treat ALK-positive NSCLC: crizotinib, ceritinib, alectinib, brigatinib and lorlatinib. There are other drugs and drug combinations that are currently in clinical trials. Invariably, patients develop acquired resistance to each of these drugs, but the mechanisms of resistance can vary. Better understanding these mechanisms of resistance will provide invaluable information and improve survival outcomes. The development of new drugs, drug combinations, and innovative treatments will significantly impact the survival rate for ALK-positive lung cancer.

      Method

      ALKFusion was conceived by a group of seven lung cancer patient advocates with over 30 years of combined patient focused advocacy experience in the lung cancer community. A primary goal of the ALKFusion group is to improve survival for people with ALK-positive NSCLC by accelerating research. Patient collaboration with key shareholders in the lung cancer arena is critical. Further, patients must be educated about their disease in order to make the best treatment decisions. Often, patients lack access to doctors who specialize in ALK-positive lung cancer, as it is a rare subset of NSCLC, so there is a particular need for patients themselves to have the educational resources to discuss with their doctor.

      Result

      As a patient-centric organization, ALKFusion is committed to accelerating research to improve the outcomes for ALK-positive lung cancer patients. ALKFusion’s vision is twofold; to initiate and support patient-centric research with a focus on collaboration and disease management, and to provide tools to patients so that they can truly be a partner in their care decisions. As patients, the members of ALKFusion are on the frontline of this disease. To aid it in achieving this goal, the group has engaged with a wide range of researchers, clinicians, other lung cancer organizations, and the pharmaceutical industry, with the aim of advancing cutting-edge research and in the treatment of those living with ALK-positive NSCLC. Further, ALKFusion publishes a monthly newsletter titled The ALKFusion Reporter, which provides summaries and links to every recent scientific publication relating to ALK-positive lung cancer.

      Conclusion

      ALKFusion is a crucial component of the "patient-first" movement that has been gaining momentum in several oncogene communities. It is a rapidly growing group of educated patient advocates who endeavour to be true partners with the medical community in order to accelerate research for ALK-positive lung cancer.

      Keywords

      ALK, patient, education