Due to their small population, few resources and fewer clinical trials are devoted exclusively to patients with rare kidney cancer (also call "non clear cell renal cell carcinoma" or nccRcc). To address this issue, Dr James Hsieh, a kidney cancer physician scientist, Deb Maskens, a patient advocate and Bill Paseman invited a global group of nccRcc physicians to meet on January 8, 2016 in San Francisco, to discuss the topic 

Consulting physicians included Drs Laurence Albiges, Axel Bex, Rachel Giles, Danny Heng, Monty Pal, Lisa Pickering, Brian Shuch, Sandy Srinivas, Ram Srinivasan and Nizar Tannir.

Deb Maskens, board member of both Kidney Cancer Canada and the International Kidney Cancer Coalition (IKCC) and Dr. Rachel Giles, IKCC Board member,  provided a patient's perspective.

The group agreed on the following Action Items.

• A "consensus paper" containing the viewpoints of the members of the January 8, 2016 discussion.  Among other things, the paper will propose Clinical trial improvements including prioritization, strict peer review, recognition by bodies of interest, making them accessible and referrable, a strong pathologic, genomic, and biological program (pathology review, tissue banking, and genomics characterization) and international alternatives for countries with no trials.  Drs. Ram Srinivasan and Axel Bex volunteered to spearhead this.
• A website listing “Centers of Excellence”, recognized experts and recommended clinical trials by subtype. Drs. Rachel Giles and James Hsieh volunteered to assist on this.
• Investigating the feasibility of a patient registry. Dr. Sandy Srinivas volunteered to investigate the possibility of using Stanford's RedCap implementation to host this.
•  A clinical trial portal for nccRCC patients and treating physicians. Drs. Nizar Tannir and James Hsieh volunteered to assist on this.

Those interested in joining the discussion are invited to contact JamesHsieh < at > rarekidneycancer < dot > org.