Working together to shape the endometrial cancer research agenda: The top ten unanswered research questions.
BACKGROUND
Endometrial cancer (EC) is the most common gynaecological cancer in developed nations and its incidence is rising. As a direct consequence, more women are dying from EC despite advances in care and improved survivorship. There is a lack of research activity and funding, as well as public awareness about EC. We sought to engage patients, carers and healthcare professionals to identify the most important unanswered research questions in EC.


METHODS
The priority setting methodology was developed by the James Lind Alliance and involved four key stages: gathering research questions; checking these against existing evidence; interim prioritisation; and a final consensus meeting during which the top ten unanswered research questions were agreed using modified nominal group methodology.


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.


CONCLUSIONS
Having established the top ten unanswered research questions in EC, we hope this galvanises researchers, healthcare professionals and the public to collaborate, coordinate and invest in research to improve the lives of women affected by EC.
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Y Louise
YL
Wan
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Rachel
R
Beverley-Stevenson
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Daloni
D
Carlisle
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Sinead
S
Clarke
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Richard J
RJ
Edmondson
Womb Cancer Alliance Priority Setting Partnership Study Group, UK; Trust Library, Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester M13 9WL, UK.
Steve
S
Glover
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Julie
J
Holland
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Carol
C
Hughes
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Henry C
HC
Kitchener
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Sarah
S
Kitson
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Tracie
T
Miles
Womb Cancer Alliance Priority Setting Partnership Study Group, UK; James Lind Alliance, National Institute for Health Research Evaluation Trials and Studies Coordinating Centre, Southampton, UK.
Richard
R
Morley
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Jo
J
Morrison
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Linsey
L
Nelson
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Melanie
M
Powell
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Laura
L
Sadler
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Anne
A
Tomlinson
Womb Cancer Alliance Priority Setting Partnership Study Group, UK.
Katharine
K
Tylko-Hill
Womb Cancer Alliance Priority Setting Partnership Study Group, UK; Trust Library, Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester M13 9WL, UK.
Jo
J
Whitcombe
Gynaecological Oncology Research Group, Institute of Cancer Sciences, Faculty of Medical and Human Sciences, University of Manchester, St Mary's Hospital, Oxford Road, Manchester M13 9WL, UK; Womb Cancer Alliance Priority Setting Partnership Study Group, UK. Electronic address: emma.crosbie@manchester.ac.uk.
Emma J
EJ
Crosbie
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D035843:Biomedical Research; D017028:Caregivers; D003299:Cooperative Behavior; D016889:Endometrial Neoplasms / Q000401:mortality / Q000628:therapy*; D005260:Female; D006282:Health Personnel; D006801:Humans; D008875:Middle Aged
Collaborative; Endometrial cancer; James Lind Alliance; Research priorities; Shared decision making