Researchers at De Montfort University Leicester (DMU) are joining forces with a national breast cancer charity to help address gaps in research into a form of the disease that accounts for around 15% of breast cancer diagnoses.
Despite its prevalence, lobular breast cancer remains under-researched, with patients and healthcare professionals facing important unanswered questions about its diagnosis, treatment and care.
Now, a collaboration between DMU and Lobular Breast Cancer UK is giving those affected by the disease a voice in determining what researchers should investigate next.
The Unlocking Lobular project, supported by the James Lind Alliance (JLA), has launched a national survey today (15 October), coinciding with Global Lobular Breast Cancer Awareness Day.
It invites patients, unpaid carers and healthcare professionals to identify the questions they believe future research should prioritise.
DMU researchers Helen Coulthard, Iain Williamson and Kerry Quincey are involved in the initiative, which brings together people with lived experience of lobular breast cancer and healthcare professionals through a Priority Setting Partnership.
The project's steering group began work in June 2026 and aims to identify the most important unanswered questions about the disease.
The James Lind Alliance is an initiative supported by the National Institute for Health and Care Research (NIHR), and it is hoped that identifying agreed research priorities will help inform future funding opportunities dedicated to lobular breast cancer.
By bringing together the perspectives of patients, carers and healthcare professionals, the partnership aims to ensure that future studies address the issues that matter most to those affected.
The first stage of the project is an anonymous survey inviting people across the UK to share their experiences and the questions they would most like research to answer.
It is open to adults who have been diagnosed and treated in the UK for invasive primary, metastatic or mixed lobular breast cancer, as well as unpaid carers who have supported someone affected by the disease.
Healthcare professionals involved in diagnosis, treatment, education, care and support are also encouraged to contribute.
Responses will help identify gaps in current knowledge and inform the partnership's work to establish research priorities.
Take part in the Unlocking Lobular survey
The survey is available at:
https://www.surveymonkey.com/r/UnlockingLobular
Find out more about the partnership:
https://lobularbreastcancer.org.uk/campaigning/james-lind-alliance-partnership/
Posted on Thursday 15 October 2026