RareKidneyCancer.org launched today. It was conceived at the Kidney Cancer Association meeting in November 2015 at Miami Bay Biscayne. There, with the kind permission of the KCA organizers, we were able to approach physicians at the conference and ask one question "What is the biggest bottleneck in creating new treatments for rare kidney cancers"? There were many answers: Dr James Hsieh said "Gathering enough patients for clinical trials". Dr. Eric Jorasch said "Understanding Basic Biology". In fact, every participant: patient, advocate and physician had a different answer. And all the answers were good, so we decided to create a site
- serving the needs of both patients and their physicians.
- containing vetted material from patients, patient advocates, physicians and researchers about rare kidney cancer.
- providing focused information about clinical trials to patients and their physicians.
- listing specialists by cancer subtype.
But such a site needs both proper organization and vetted content. As such, a group of consulting physicians was convened on Janury 8th 2016 and provided us input on how to achieve both.
As a second step, we are also working to create a patient registry to aid in both the patient and physician in clinical trial selection.
But more on that at a later time.