# Every patient is asked once at diagnosis whether researchers may contact them

Source: https://onco.cc/ideas/idea-tr1-opt-out-research-contact-register/  
OnCo record `idea-tr1-opt-out-research-contact-register` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

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

## Sources

- NIHR Be Part of Research: https://bepartofresearch.nihr.ac.uk/
- SHARE (Scottish Health Research Register): https://www.registerforshare.org/

## Connected records

- institutions: [Cancer Research UK](https://onco.cc/institutions/cruk/)
- bottlenecks: [Trials enrol too few, too slowly](https://onco.cc/bottlenecks/b-trial-enrolment/)

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