Unlocking Lobular: James Lind Alliance Priority Setting Partnership

Lobular Breast Cancer makes up around 15% of all breast cancer diagnoses and is increasingly recognised as a distinct type of breast cancer from the more prevalent ductal breast cancer.

Despite an increase in research through committed networks in the UK and globally, it remains an under-studied disease and there are many unanswered questions and challenges to improve treatments and outcomes for everyone impacted by Lobular.

Additionally, people with Lobular have largely been excluded from clinical trials due to the difficulty in measuring treatment responses due to the more diffuse tumours that make up a unique feature of a Lobular diagnosis.

It is only through robust research and understanding can we change the UK-wide guidelines that determine the treatment we receive for a Lobular diagnosis.

People with lived experience of a Lobular diagnosis, healthcare professionals, researchers and funders want to address this gap and identify research priorities in the UK.

Our PSP began in August 2026, working with the researchers, clinicians and Lobular Breast Cancer patient advocates we recruited on to the Steering Group.

The PSP is funded by De Montfort University and Lobular Breast Cancer UK, with support from the James Lind Alliance.

James Lind Alliance Priority Setting Partnerships (PSP) helps to make research as meaningful as possible to the people who need it and result in real clinical change.

They bring together people with a lived experience of a disease, carers and healthcare professionals to identify key research questions through a structured process.  The findings from PSPs often encourage the funding of these research questions. 

Our PSP will prioritise the Top 10 research challenges in the UK in primary and secondary/metastatic Lobular Breast Cancer.

We have recruited people with a lived experience of Lobular, their carers and healthcare professionals to our PSP Steering Group and we will be asking everyone impacted by Lobular across the UK to participate as the PSP develops. 

Meet the people with lived experience of a Lobular diagnosis, researchers and clinicians who make up the ‘Unlocking Lobular’ Steering Group. Their role is to agree which treatments should become part of clinical practice and deserve priority attention.