Hi, I’m Bill Paseman. I was diagnosed with Kidney Cancer in early 2014 and my left kidney was totally removed March 24, 2014. In English, test results showed me to be “cancer free” with a “high risk of recurrence”. Technically, test results show I have pT3aN0M0 RCC (Renal Cell Carcinoma), papillary type, (5.6 cm), Fuhrman grade 2, with focal extra capsular extension, margins negative. more here.
After attending a couple of Kidney Cancer Association meetings, I felt that more focus needed to be placed rare kidney cancers, and founded rarekidneycancer.org in January of 2016 with the help of Deb Maskens, Dr. James Hsieh and ten RCC specialists.
However, as Dr. Laurence Albiges noted in 2017, there has been no increase in p1RCC overall survival since 2007. If I am to benefit from any breakthrough, the pace has to speed up. So in 2018 I split my effort into three parts, each riskier than the next. The least risky is simply supporting KidneyCAN in their government fundraising efforts. A bit riskier is working as a CDMRP grant reviewer. The CDMRP is mandated to fund rare cancer projects with higher risk/reward. And finally, in conjunction with researchtothepeople.org, the most risky is attempting to speed up the research process itself using events called “hackathons”.
A hackathon centers on particular patient cases (like mine) and has a Diagnostic and Therapeutic stage. During a hackathon’s diagnostic stage, teams of research participants are each given the patient’s WGS and RNA-seq data and asked to find “Genes of Interest”. The organizers then apply gaming and AI metrics to objectively score each team’s diagnosis. This lets us objectively redirect our limited resources in the most promising directions at the hackathon’s therapeutic stage. This, in turn, has lead to novel p1RCC diagnostic and treatment recommendations.
For example, after 16 teams looked at my DNA data in 2018, Saed Sayad’s team from Rutgers picked FHL1, KNG1 and UMOD as “Genes of Interest”. These picks scored higher than 16 other teams when ranked using a holdout set consisting of my my RNA-seq’s differential expression. These picks also correlated closely with my history of DVTs and petrochemical exposure. Dr. Sayad went on to recommend investigation of Valproic acid and Baicalein as therapeutics.
In November 2021 I discussed this process with Dr. Msaouel, who suggested that I incorporate Judea Pearl’s work on causal reasoning to speed up the research process. This is my current focus.