{"entity":{"id":"idea-moon-results-back-to-participants","kind":"idea","name":"Plain-language trial results returned to every participant within a year","aka":[],"tldr":"If you join a cancer trial you should be told what it found, in plain words, within twelve months of the results, including if the treatment did not work.","summary":"Most trial participants never learn the results. The EU Clinical Trials Regulation requires lay summaries; enforcement and quality are patchy, and most other jurisdictions have no requirement. The proposal is a global norm: lay summary within 12 months of primary completion, delivered directly to participants, with negative results treated identically, and posting in registries as a condition of publication.","asOf":"2026-09-08","links":[{"label":"ClinicalTrials.gov","url":"https://clinicaltrials.gov/"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-patient-voice","b-negative-results"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Returning results increases willingness to enrol in future trials among participants and their networks and increases timely reporting of negative trials.","rationale":"Reciprocity is the moral basis of research participation; participants who receive results are more likely to recommend trials, and the requirement creates a deadline that also forces disclosure of negative findings.","test":"Compare enrolment attitudes and re-participation in cohorts who did and did not receive summaries; audit registry completeness where the rule is enforced versus not.","maturity":"being-tested-at-scale","actor":"regulator","cost":"small","horizonYears":2},"route":"/ideas/idea-moon-results-back-to-participants/","neighbours":{"bottleneck":[{"id":"b-negative-results","kind":"bottleneck","name":"Failures are hidden","route":"/bottlenecks/b-negative-results/"},{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","route":"/bottlenecks/b-patient-voice/"}]}}