Vice President Joe Biden’s National Cancer Moonshot Summit last week brought the search for a cure back into the news with the announcement of the “shared data initiative.”  Some myeloma patients have asked, “Can the IMF benefit from this approach?”  What they may not realize is that we’ve been sharing data all along! The IMF’s International Myeloma Working Group (IMWG) has been gathering and sharing data from all major myeloma institutions globally for more than a decade. And our Black Swan Research Initiative®, launched in 2012, is actively sharing data on our path to find the cure.

Myeloma data sharing

As far back as 2005, for example, the important International Staging System (ISS) was published by the IMWG based upon data collected from 26 institutions on close to 12,000 patients. Evaluating the details of patients who have been closely monitored in a clinical trial setting is critical for accurately understanding myeloma outcomes. This process has been a building block for the success of the IMWG. More than 20 manuscripts have been published from these types of collaborative efforts, on everything from assessments of the impact of age or molecular-risk status, frontline or relapse autologous stem cell transplant, use of maintenance, and the like.  

The baseline for achieving cure

Another example of our use of shared data is the upcoming IMWG analysis that examined outcomes in nearly 8,000 patients who achieved sustained complete remission. The question posed by this analysis was: Which patients are most likely to stay in continuous remission for 10 years and beyond? The broad answer is that younger patients with lower myeloma tumor burden are more likely to be long-term survivors. Within this group, approximately 14% meet a definition of “cured,” which is achieving a long-term survival equal to that of an individual of the same age, but without myeloma.

Black Swan Research Initiative

The findings from our collaborative research on 8,000 long-term survivors provide a baseline for all efforts to achieve cure in myeloma. The long-term survivors study is but one of many projects within the IMF’s own cancer-curing “moonshot,” the Black Swan Research Initiative.  The success of Black Swan illuminates the shortcomings of the “Cancer Moonshot.” There are many types of cancer, yet, relatively speaking, the Moonshot does not provide much money to fund major new initiatives for each individual type of cancer. As noted by Ezekiel Emanuel in STAT News, “Let’s be honest. There’s not that much money in the moonshot. I just don’t think it is going to have that big an impact. We’ve already got a lot going on in cancer. More than 800 drugs are in cancer clinical trials. That’s really where we should be focused.”

And that is exactly what the IMF’s Black Swan Research Initiative investigators are doing! Having developed and standardized MRD testing, we are now in a position to proceed with the many clinical trials to test all the new agents available and in development. With MRD as an endpoint, we will have a test sensitive enough to identify the drugs that will eliminate residual resistant myeloma and achieve cure—as simple as that!

So, while the motivation driving Vice President Biden’s Cancer Moonshot and its participants is greatly respected, researchers for each cancer must find their own best way forward. In myeloma, the IMF’s Black Swan Research framework is now well established and achieving great success. Today, there is great optimism about achieving better and better outcomes for myeloma patients around the world.

Image of Dr. Brian G.M. DurieDr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.

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