{"entity":{"id":"idea-bio1-rare-cancer-organoid-bank","kind":"idea","name":"An open organoid bank for cancers too rare to have models","aka":[],"tldr":"Rare and paediatric cancers often have no cell line or xenograft anywhere in the world, so no one can test drugs on them. A funded network collecting tissue at referral centres, deriving organoids under one protocol and distributing them at cost with no reach-through rights would change that.","summary":"Rare and paediatric cancers lack cell lines and xenografts, which blocks even basic drug testing. A distributed programme would fund collection at referral centres, derive organoids and xenografts under a common protocol, characterise them genomically, and distribute them at cost with no reach-through rights. Precedents include the Human Cancer Models Initiative and paediatric preclinical testing programmes.","asOf":"2026-09-08","links":[{"label":"Bottleneck evidence (Lab models that fail to predict what happens in patients): Wong, Siah & Lo, Estimation of clinical trial success rates (Biostatistics 2019)","url":"https://doi.org/10.1093/biostatistics/kxx069"}],"tags":[],"related":[],"cancers":["sarcoma","neuroblastoma","cholangiocarcinoma"],"sections":[],"technologies":["organoids","pdx-models"],"targets":[],"drugs":[],"companies":[],"institutions":["nci","cold-spring-harbor"],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-preclinical-models","b-rare-cancers"],"keyPapers":["paper-wong-biostatistics"],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Providing at least three characterised models for each of 50 rare cancer types measurably increases the number of published drug-testing studies and industry programmes in those diseases within five years.","rationale":"Model scarcity, not biological intractability, is the first barrier for rare disease drug development; a model is a prerequisite for any preclinical package.","test":"Fund derivation for ten rare types, distribute openly, and count downstream requests, publications and programme starts against matched types without models.","maturity":"preclinical-evidence","actor":"philanthropy","cost":"medium","horizonYears":5},"route":"/ideas/idea-bio1-rare-cancer-organoid-bank/","neighbours":{"cancer":[{"id":"cholangiocarcinoma","kind":"cancer","name":"Biliary tract cancer (cholangiocarcinoma)","route":"/cancers/cholangiocarcinoma/"},{"id":"neuroblastoma","kind":"cancer","name":"Neuroblastoma (paediatric)","route":"/cancers/neuroblastoma/"},{"id":"sarcoma","kind":"cancer","name":"Sarcomas (soft tissue, bone, GIST)","route":"/cancers/sarcoma/"}],"technology":[{"id":"organoids","kind":"technology","name":"Patient-derived organoids","route":"/technologies/organoids/"},{"id":"pdx-models","kind":"technology","name":"Patient-derived xenografts","route":"/technologies/pdx-models/"}],"institution":[{"id":"cold-spring-harbor","kind":"institution","name":"Cold Spring Harbor Laboratory","route":"/institutions/cold-spring-harbor/"},{"id":"nci","kind":"institution","name":"National Cancer Institute (NIH)","route":"/institutions/nci/"}],"bottleneck":[{"id":"b-preclinical-models","kind":"bottleneck","name":"Lab models that fail to predict what happens in patients","route":"/bottlenecks/b-preclinical-models/"},{"id":"b-rare-cancers","kind":"bottleneck","name":"Rare and paediatric cancers without markets","route":"/bottlenecks/b-rare-cancers/"}],"paper":[{"id":"paper-wong-biostatistics","kind":"paper","name":"Estimation of clinical trial success rates and related parameters","route":"/key-papers/paper-wong-biostatistics/"}]}}