Based on process problems I've seen at hackathons to date, my "hackathon goal" was to map Pete Kane's objectives1 to a plan containing activities that we could execute and improve at TRI-con. The subsequent "2020 Kidney Cancer Hackathon: Results" post describes what actually happened. Of course, I expect the plan to be iterated upon and improved as time goes on.
Expectations: The expectation we have from participants is 1) that the data is not used past the hackathon without permission, 2) any result created is shared with the patient (Bill, who will keep it confidential until publication), and 3) if published, the publication acknowledges the researchers who created the data upon which the results are based.
CancerCommons and PatientsLikeMe are two organizations which will take your patient data and make it available for research. In addition, below is a list of companies which will purportedly store and rent out your clinical and genomic data, and then give you a cut of the proceeds. Others are starting up.
Some teams have said that they would like to continue their projects. Below is the list I have heard about plus team leads.
Those interested in joining or creating a group, please contact Bill@rarekidneycancer.org and I'll connect you up.
- Thanks to Alex Feltus for this curated list from James and his own work. Both James and Alex produced this list using data from TCGA.