# OnCo record b-real-world-evidence (bottleneck). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)". Whole corpus: https://onco.cc/api/v1/onco.nt
@prefix schema: <https://schema.org/> .
@prefix onco: <https://onco.cc/ns#> .
@prefix xsd: <http://www.w3.org/2001/XMLSchema#> .

<https://onco.cc/bottlenecks/b-real-world-evidence/>
  a schema:Thing ;
  onco:kind "bottleneck" ;
  schema:identifier "b-real-world-evidence" ;
  schema:name "Weak real-world evidence and registries"@en ;
  schema:description "We do not reliably know what happens to patients after approval, so we cannot tell which drugs deliver in practice."@en ;
  schema:url <https://onco.cc/bottlenecks/b-real-world-evidence/> ;
  schema:dateModified "2026-09-08"^^xsd:date ;
  schema:citation <https://doi.org/10.1001/jamainternmed.2019.0462>, <https://www.fda.gov/science-research/science-and-research-special-topics/real-world-evidence>, <https://www.fda.gov/about-fda/oncology-center-excellence/project-confirm>, <https://digital.nhs.uk/ndrs/data/data-sets/sact> ;
  onco:related <https://onco.cc/collections/fda-approvals/>, <https://onco.cc/collections/seer/>, <https://onco.cc/collections/globocan/>, <https://onco.cc/collections/esmo-guidelines/>, <https://onco.cc/collections/clinicaltrials-gov/>, <https://onco.cc/ideas/idea-data-rwe-rct-calibration-library/>, <https://onco.cc/ideas/idea-data-accelerated-approval-registry-condition/>, <https://onco.cc/ideas/idea-data-rwpfs-validation-programme/>, <https://onco.cc/ideas/idea-data-registry-based-rcts/>, <https://onco.cc/ideas/idea-data-off-label-outcomes-registry/>, <https://onco.cc/ideas/idea-data-real-world-dose-intensity/>, <https://onco.cc/ideas/idea-data-excluded-populations-rwe-mandate/>, <https://onco.cc/ideas/idea-data-linked-pharmacovigilance-interactions/>, <https://onco.cc/ideas/idea-data-access-programme-outcomes/>, <https://onco.cc/ideas/idea-data-registry-genomics-linkage-programme/>, <https://onco.cc/ideas/idea-data-observational-study-registration/>, <https://onco.cc/ideas/idea-data-gcp-for-real-world-data/>, <https://onco.cc/ideas/idea-data-registry-follow-up-of-trial-participants/>, <https://onco.cc/ideas/idea-data-wearable-endpoints-validation/>, <https://onco.cc/ideas/idea-data-external-control-arm-standard/>, <https://onco.cc/ideas/idea-data-paediatric-rwe-consortium/>, <https://onco.cc/ideas/idea-data-sequencing-analysis-per-approval/>, <https://onco.cc/ideas/idea-data-outcome-based-price-reassessment/>, <https://onco.cc/ideas/idea-moon-federated-rwe-network/> ;
  onco:companies <https://onco.cc/companies/foundation-medicine/>, <https://onco.cc/companies/tempus/>, <https://onco.cc/companies/guardant-health/> ;
  onco:institutions <https://onco.cc/institutions/asco/>, <https://onco.cc/institutions/esmo/>, <https://onco.cc/institutions/nci/> ;
  onco:terms <https://onco.cc/terms/real-world-evidence/>, <https://onco.cc/terms/accelerated-approval/>, <https://onco.cc/terms/os/>, <https://onco.cc/terms/pfs/> ;
  onco:keyPapers <https://onco.cc/key-papers/paper-gyawali-jama-intern-med/> .