Follow every trial participant for 30 years through registry linkage
Trials stop following patients after a few years, so late side effects and late relapses are missed. Link trial participants to national records so follow-up continues automatically for decades.
Late effects of cancer treatment (second cancers, cardiac disease, endocrine failure) appear decades later, long after trials close. The Childhood Cancer Survivor Study shows the value of long follow-up but relies on costly active contact. The proposal requires consent for registry linkage in every publicly funded trial and funds automated linkage of trial participants to cancer, death and hospital records for 30 years, with pooled analysis across trials.
- Weak real-world evidence and registries · We do not reliably know what happens to patients after approval, so we cannot tell which drugs deliver in practice.
- Survivorship and late effects are neglected · Tens of millions of people live after cancer with heart damage, infertility, second cancers and fear, and few services.
- Trial design, endpoints and cost · A phase 3 trial takes years and hundreds of millions of dollars, and often answers a question that has already moved on.
Pages like this
not linked directly; found by shared links- IdeaA national late-effects registry linking treatment exposures to outcomes decades later
Shares Survivorship and late effects are neglected, Weak real-world evidence and registries.
- IdeaAn international consortium pooling the outcome of every treated child with cancer
Shares Children's Oncology Group (COG), Weak real-world evidence and registries.
- IdeaStandards for external control arms built from federated real-world data
Shares Weak real-world evidence and registries, Trial design, endpoints and cost.
- IdeaAfter approval, a pragmatic trial in the patients the pivotal trial excluded
Shares Weak real-world evidence and registries, Trial design, endpoints and cost.
- IdeaA publicly held library of investigational drugs available for academic combination trials
Shares ECOG-ACRIN Cancer Research Group, SWOG Cancer Research Network.
- IdeaRegistry-based randomised trials for oncology comparative effectiveness
Shares Weak real-world evidence and registries, Trial design, endpoints and cost.
- IdeaCheap long-term survival follow-up by linking trial participants to registries
Shares Weak real-world evidence and registries, Trial design, endpoints and cost.
- InstitutionUniversity of Wisconsin Carbone Cancer Center
Shares ECOG-ACRIN Cancer Research Group, Children's Oncology Group (COG).