# An open organoid bank for cancers too rare to have models

Source: https://onco.cc/ideas/idea-bio1-rare-cancer-organoid-bank/  
OnCo record `idea-bio1-rare-cancer-organoid-bank` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- Bottleneck evidence (Lab models that fail to predict what happens in patients): Wong, Siah & Lo, Estimation of clinical trial success rates (Biostatistics 2019): https://doi.org/10.1093/biostatistics/kxx069

## Connected records

- cancers: [Biliary tract cancer (cholangiocarcinoma)](https://onco.cc/cancers/cholangiocarcinoma/), [Neuroblastoma (paediatric)](https://onco.cc/cancers/neuroblastoma/), [Sarcomas (soft tissue, bone, GIST)](https://onco.cc/cancers/sarcoma/)
- technologies: [Patient-derived organoids](https://onco.cc/technologies/organoids/), [Patient-derived xenografts](https://onco.cc/technologies/pdx-models/)
- institutions: [Cold Spring Harbor Laboratory](https://onco.cc/institutions/cold-spring-harbor/), [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/)
- bottlenecks: [Lab models that fail to predict what happens in patients](https://onco.cc/bottlenecks/b-preclinical-models/), [Rare and paediatric cancers without markets](https://onco.cc/bottlenecks/b-rare-cancers/)
- key papers: [Estimation of clinical trial success rates and related parameters](https://onco.cc/key-papers/paper-wong-biostatistics/)

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