Table 1.

Advances in Chordoma Research Assets

	2007	2017	Interventions
Researcher community	Small, disconnected	>300 active researchers; robust collaboration	International Chordoma Research Workshops; networking events
Patient community	None	>1,800 patients	Facebook group; website; online advertising and search engine optimization; educational materials; Chordoma Community Conferences
Tumor tissue	Scarce, no centralized source	Centralized repository with tissue from >200 cases	Tumor donation program allows patients to donate tumor from any US hospital; CF Biobank stores and distributes tumor samples
Genome characterization	None	35 cases sequenced	Chordoma Genome Project, in partnership with academic labs
Cell lines	1	17	Cell line prize; cell line validation pipeline; genomic characterization; publicly accessible cell-line repository
Patient-derived xenografts (PDX)	None	5	Tumor donation program coupled with rapid implantation in vivo; PDX prize; PDX validation pipeline; publicly accessible PDX repository
Small-molecule screening	None	>10,000 compounds screened, including all FDA-approved drugs	Collaboration with NIH Chemical Genomics Center; grants to academic investigators; collaborations with industry
Functional genomic screening	None	Genome-wide CRISPR/Cas9 screens; targeted shRNA screen	Grants to academic investigators
In vivo evaluation	None	>20 drugs evaluated	CF drug screening pipeline provides in vivo evaluation as a service to academic and industry collaborators
Clinical trials	1 completed clinical trial	Pipeline of 7 new clinical trials	Clinical trials program supports trials with: funding, trial design, patient education, and outreach

Source material: Chordoma Foundation (J. Sommer, personal communication) and www.chordomafoundation.org.