I received this question two days ago on SmartPatients.com "What do your docs say about Pap type 1?"
Good question. Here is my detailed response.
"So far, NO improvement in outcome over the last decade."
Blog
2020 Kidney Cancer Hackathon: Results
Summary
2020 Kidney Cancer Hackathon: Objectives and Plan
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 iterate
2020 Kidney Cancer Hackathon: Data
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.
2020 Kidney Cancer Hackathon: Bibliography
Readings
2020 Kidney Cancer Hackathon
Check out the Press Release
Organizing Silos of Patient information for Rare Disease Research
As described previously, it is difficult to do rare disease research since the data required to do so is scatted in multiple silos. Here we link to a
Federated Computing and Game Theory: Working Better Together
Secure Common Open Repositories
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.
2018 Kidney Cancer Hackathon: Continuing Projects
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.
