Transforming Health Care through Innovative and Impactful Research

Corrie Painter, Ph.D. (Text Version)

2024 RCRP Vignette

Title: Championing Rare Cancer Research as a Scientist and Survivor

The Rare Cancer Research Program is focused on exactly what the name implies, funding rare cancer grants that have been submitted by incredibly smart, dedicated champions of rare disease out in the world.

By way of background in the space of rare cancers, it might help to know that I am surviving an exceedingly rare cancer myself called angiosarcoma, that has a very dismal prognosis, and my career and subsequent placement here is really hyper-focused on lived experience as both a scientist and a patient trying to champion this disease.

I'm a scientist by training. I have a background in biochemistry. That's what I got my PhD in. I did a post-doc in cancer immunology. I was lucky enough to be part of the inaugural group of people who really helped set the vision for this initiative. And it was such an honor to be asked to participate in this and really lend my background as both a scientist and a patient in this space, to conceive of the best ways to surface information from the scientific community that could be funded in order to create impact for rare cancer patients.

The role that I play is to give a programmatic review of grants that have already been evaluated by scientific reviewers. We rely on this very deep domain knowledge of the individual cancers that they are reviewing to help guide our interpretation of the grant itself.

I'm looking at the impact both as a scientist and also as a patient. And so I understand what the implications are going to be once it hits the literature for other scientists to turn it into potential therapy for a patient or use it to augment their own hypotheses to further progress their own ideas. But I also understand what it's like from the perspective of a patient who is desperate for any information that might lead to a deeper understanding of their own disease, with the hope that even if it doesn't help them, it might one day stop this awful thing that's happening to them from happening to another patient just like them.

When you have a roundtable that includes all stakeholders - scientists and patients and advocates- discussing the potential impact it might have, you get a sense for the end-to-end process from idea submission all the way down to how that might be useful and interpreted and implemented. When you're sitting in a room with somebody who's lost their child to a disease and you are then evaluating the potential impact of an idea that may help scratch the surface on how another child might not die, it has a much heavier weight and makes you think very critically about the decisions that you're making. And I think in that way really enriches the entire process.

Don't give up. I know personally how difficult it is to try to champion rare cancers, but it's the intellect and diligence of folks that have really decided to focus their lives to help those that are in these super underserved populations, that are completely dependent on your ability to write these grants and send them to people like me.