Working together to shape the endometrial cancer research agenda: The top ten unanswered research questions (Lynch syndrome??)

abstract

Highlights

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Endometrial cancer (EC) is under-researched and there are many knowledge gaps.

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We used James Lind Alliance methodology to prioritise unanswered research questions in EC.

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The top 10 questions span EC risk prediction, diagnosis, treatment and survivorship.

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Tackling these issues through research will improve the lives of women affected by EC.

Results

Our first online survey yielded 786 individual submissions from 413 respondents, of whom 211 were EC survivors or carers, and from which 202 unique unanswered research questions were generated. 253 individuals, including 108 EC survivors and carers, completed an online interim prioritisation survey. The resulting top 30 questions were ranked in a final consensus meeting. Our top ten spanned the breadth of patient experience of this disease and included developing personalised risk scoring, refining criteria for specialist referral, understanding the underlying biology of different types of EC, developing novel personalised treatment and prevention strategies, prognostic and predictive biomarkers, increasing public awareness and interventions for psychological issues.