{"entity":{"id":"idea-tr1-opt-out-research-contact-register","kind":"idea","name":"Every patient is asked once at diagnosis whether researchers may contact them","aka":[],"tldr":"At diagnosis, people would be asked a single question: may we contact you about research that fits your cancer? Those who say yes would be findable by trial teams without repeated cold approaches.","summary":"A health-system-level consent-to-contact register, recorded in the EHR at diagnosis, allowing approved trial teams to approach registered patients whose records match a protocol. The UK's Be Part of Research and Scotland's SHARE register are precedents; the idea is to make the question a mandatory element of cancer diagnosis pathways and to link the register to matching tools.","asOf":"2026-09-08","links":[{"label":"NIHR Be Part of Research","url":"https://bepartofresearch.nihr.ac.uk/"},{"label":"SHARE (Scottish Health Research Register)","url":"https://www.registerforshare.org/"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":["cruk"],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-trial-enrolment"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Health systems with a diagnosis-time consent-to-contact register will approach eligible patients more often and enrol more, particularly in trials for rare or biomarker-defined cancers where prospective identification matters most.","rationale":"Most patients say they would join a trial if asked; the bottleneck is being asked. A register moves identification from chance encounters to systematic search.","test":"Compare trial approach and enrolment rates between regions with and without a mandatory register, adjusting for trial availability.","maturity":"being-tested-at-scale","actor":"policy","cost":"small","horizonYears":2},"route":"/ideas/idea-tr1-opt-out-research-contact-register/","neighbours":{"institution":[{"id":"cruk","kind":"institution","name":"Cancer Research UK","route":"/institutions/cruk/"}],"bottleneck":[{"id":"b-trial-enrolment","kind":"bottleneck","name":"Trials enrol too few, too slowly","route":"/bottlenecks/b-trial-enrolment/"}]}}