We are delighted to announce the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) in Neuroendocrine Cancer, jointly led by UKINETS and Neuroendocrine Cancer UK. This important national initiative aims to identify and prioritise the most pressing unanswered questions in the diagnosis, treatment, and care of neuroendocrine cancers, as voiced by patients, carers, and healthcare professionals. The PSP will be led by Professor Samuel Ford, with Ms Klaire Exarchou serving as the Partnership Coordinator.
Neuroendocrine cancers are complex, rare, and often poorly understood. Despite growing awareness and increasing incidence, research remains fragmented, with many unanswered questions about how best to diagnose, treat, and support people living with these conditions. There is an urgent need to focus research on the areas that matter most to those directly affected—patients, families, and clinicians.
The JLA is a non-profit initiative, established in 2004 and funded by the National Institute for Health and Care Research (NIHR) in the UK. Its primary role is to bring together patients, carers, and healthcare professionals in equal partnership to identify and prioritise the most important unanswered questions or evidence uncertainties about the effects of treatments and care.
Through a structured and inclusive process known as a PSP, the JLA helps ensure that future health research focuses on the issues that matter most to those directly affected by a particular condition. This helps address gaps between what research is currently being done and what patients and clinicians actually need answers to in real-world settings.
The JLA’s approach increases the relevance and impact of research by:
In essence, the JLA ensures that research is driven by genuine need rather than academic or commercial interests alone.
More information and updates to follow.
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