Frequently asked questions
What does the Womb Cancer Alliance survey hope to achieve?
We want to identify the most important womb cancer research questions that remain unanswered. Research questions may include how womb cancer is caused in the first place and any other aspect of womb cancer biology. We are also interested in questions about the prevention, diagnosis and the treatment of womb cancer.
Am I eligible to take part in the survey?
We’d like to hear from you if you:
- Are at risk of womb cancer
- Have been diagnosed with womb pre-cancer or cancer
- Have cared for or supported a family member or friend with womb cancer
- Are a doctor, nurse or other healthcare professional caring for women with womb cancer
- Are a clinical academic or healthcare professional involved in womb cancer research
What questions can I include in the survey?
We are asking you to tell us the question(s) about womb cancer that you haven’t been able to find the answers to. All you have to do is write a sentence or two about whatever it is. Your questions can relate to anything on:
- The biology of womb cancer
- The care of patients with womb cancer, including any aspect of prevention, diagnosis and treatment
What do you mean by care?
We mean how womb cancer is dealt with in the healthcare setting by healthcare professionals, including clinical tests and treatments. This could cover (but is not limited to) medical or psychological issues.
Does it matter if I don’t know whether my question has been researched or not?
No. We are asking for questions that are unanswered for you. We’ll check whether your question has been answered by research or not. We would much rather you asked your question – whatever it is. If your question has been researched, and if others have had the same challenge finding the answer, then the answer needs to be more accessible. Highlighting these gaps will help us identify where communication can be improved. This is another way that this project can improve the care and support that people affected by womb cancer receive.
Can I take part in helping to prioritise the questions after the survey closes?
Yes you can. If you would like to be involved in the workshop where we decide our ‘top ten’ womb cancer research priorities, please go to the get involved page above. Or you can leave us your details when you complete your survey. If you would like to receive updates about this research, please go to the get involved page to sign up for the newsletter.
What is the James Lind Alliance?
The James Lind Alliance (JLA) is a non-profit organisation funded by the National Institute of Health Research (NIHR). It provides a ‘tried-and-tested’, fair and rigorous process to help patients and clinicians work together to agree the most important research questions in a particular area (in this case, womb cancer), in order to influence the prioritisation of future research in that area.
What is the Womb Cancer Alliance?
It is a group of patients, clinicians and charity representatives who are interested in womb cancer. Its primary mission is to establish the most important womb cancer research topics from both patient and clinical perspectives.
It is chaired by Dr Richard Morley, from the James Lind Alliance, to ensure transparency and fairness. Its formation was instigated by Dr Emma Crosbie from the Institute of Cancer Sciences at the University of Manchester, who has been frustrated by the lack of research effort and public awareness about womb cancer.
Through the Womb Cancer Alliance, people directly affected by womb cancer will get the chance to have their say in setting research priorities for the first time.
We are particularly looking to hear from patients, carers and healthcare professionals who look after women with womb cancer. We hope our initiative will also raise public awareness about womb cancer and stimulate funding bodies to prioritise womb cancer research applications.
Who is involved in the alliance?
The Womb Cancer Alliance is coordinated by Dr Emma Crosbie from the Institute of Cancer Sciences at the University of Manchester. It is chaired by an independent consultant from the James Lind Alliance, Dr Richard Morley. Several organisations are represented in the alliance that will oversee the womb cancer research question priority setting process:
- Macmillan Cancer Support,
- The National Cancer Research Institute (NCRI),
- the National Forum Gynaecology Oncology Nurses (NFGON),
- Cochrane Gynaecological Cancer Group,
- Wellbeing of Women (a charity dedicated to improving the health of women and babies); and
- WombCancerVoice (a patient support forum).
Other organisations that can reach patients and families affected by womb cancer and healthcare professionals from gynaecology, gynaecological oncology and general practice have pledged their support for the alliance.
Can other organisations still get involved?
Yes. We are keen to hear from any organisations who can reach families affected by womb cancer and the healthcare professionals who care for and support them. We want to make this alliance as inclusive as possible.
How can organisations and the public find out more?
For more information or to get involved, please go to the get involved or contact pages above.
What do you hope to achieve?
We hope that this project will define the future direction of womb cancer research and act as a catalyst for more funding opportunities for research in this area. We hope this process will raise public awareness about womb cancer and bring together individuals and organisations with the necessary energy and commitment to set up a womb cancer specific charity in the UK.
Why are you doing this?
The aim of the partnership is to ensure that future womb cancer research brings the greatest possible benefit to people who are affected by the disease, including patients, their families and medical staff, by identifying those unanswered questions that are of greatest importance to them.
Why do we need to ask for both patients’ and clinicians’ ideas?
Research on the effects of treatments and how different health conditions are managed often overlooks the shared interests of patients, carers and clinicians. As a result, questions they all consider important are not addressed and many areas of potentially important research are neglected.
The JLA exists to help address this imbalance. Even when researchers address questions of importance to patients and clinicians, they often fail to provide answers that are useful in practice.
Another purpose of the JLA is to address the mismatch between what researchers want to research, and the practical information that is really needed by patients and clinicians every day. The womb cancer PSP is going to bring together the shared views of patients and clinicians in a very powerful way and highlight exactly what needs addressing in womb cancer research to make the biggest difference.
How is womb cancer research currently funded and prioritised?
Researchers and research funders currently determine which womb cancer research questions are answered. Often this is done with reference to current literature, to identify where the gaps in knowledge are. Sometimes there is input from patients and healthcare professionals but never in such a thorough and systematic way as will be achieved through this alliance.
How long will the project take? What is the timeline?
This project will take approximately 18 months to complete. The alliance formed in October 2014 and the final report detailing the ‘top 10 research priorities in womb cancer’ is expected to be completed in January 2016. The current timeline is:
- April 2014 – Womb cancer priority setting partnership idea accepted by James Lind Alliance.
- August 2014 – Core steering group formed and mission agreed.
- October 2014 – Inaugural meeting of core steering group.
- October 2014 - December 2014 – Protocol, website and survey drafted, partners invited to take part.
- December 2014 – February 2015 – Survey piloted with patients and clinicians.
- February 2015 – Protocol, website and survey agreed by Steering Group.
- March 2015 – Launch of survey to generate research questions.
- May 2015 - September 2015 – Collate questions and uncertainties from survey. Generate long list.
- September 2015 – Prioritisation survey open.
- December 2015 – Final prioritisation workshop.
- January 2016 – Final report detailing ‘top 10’ research priorities in womb cancer. Research questions entered into DUETS. Abstracts submitted for conferences and manuscript prepared for publication.
Why will this project take so long?
We want to involve as many people as possible in this project and this means allowing sufficient time to reach out to patients and families who have been affected by womb cancer and the busy healthcare professionals who support them. In addition to this, it will take several months to collate the research questions generated by the survey and identify gaps in knowledge, before prioritising these questions systematically to identify areas for future research.
How many survey responses are you hoping to get?
It is difficult to predict the response we will receive, as nothing like this has been done before in womb cancer. Other partnerships conducted in this way have received a fantastic response, generating hundreds if not thousands of unanswered research questions!
Who was James Lind?
Three centuries ago, sailors were dying of scurvy. There were many uncertainties about the effects of treatments that were being used at the time. A Scottish naval surgeon, James Lind, decided to confront these uncertainties by comparing six of the different remedies in use at that time in a controlled trial amongst 12 men. By conducting this first ever clinical trial, James Lind showed that patients treated with citrus fruits recovered much more rapidly than patients given other treatments.
- See: James Lind Alliance