What is a James Lind Alliance (JLA) Priority Setting Partnership (PSP)?

The James Lind Alliance (JLA) is a not‑for‑profit organisation set up in 2004. It brings together patients, carers and healthcare professionals to decide which research questions matter most. These partnerships focus on the ‘unanswered questions’ that people agree are the biggest priorities for future research. 

This helps make sure research funders understand what is most important to those directly affected. The JLA is supported and coordinated by the National Institute for Health and Care Research (NIHR).

Why do we need a PSP on thyroid disease?

Thyroid disease is very common, affecting around one in twenty people in the UK. It is much more common in women and can affect people at any stage of life. Some thyroid diseases are rare and not well understood. 

Despite this, treatments for most thyroid disease have changed little in over 80 years. Many people live with ongoing symptoms, and some experience long delays before receiving a diagnosis. Thyroid disease can impact daily life, wellbeing and work, and many people feel the care available does not fully meet their needs.

More thyroid research is therefore critical for advancing understanding and treatments of thyroid disease. With limited funding available, it is crucial that the thyroid community agrees on the priority areas for thyroid research.

What will our Partnership do?

Led by the British Thyroid Foundation (BTF), our Priority Setting Partnership (PSP) will:

• Bring together patients, carers and healthcare professionals to identify the most important unanswered questions about thyroid disease
• Look at all aspects of thyroid disease, including causes, symptoms, diagnosis, prevention, treatment, access to information, and long‑term effects on physical and mental health
• Agree a shared list of the top priorities for future thyroid research
• Share the results widely and take them to organisations that fund health research, so they can shape future studies

What is included?

• Thyroid disease diagnosed by a healthcare professional, including sub‑clinical thyroid disease
• Thyroid disease at all stages of life
• Long‑term health effects, including those experienced by thyroid cancer survivors

What is not included?

• Active treatment for thyroid cancer
• Parathyroid conditions
• Health services outside the UK

What could this mean for future thyroid research?

Agreeing on the top 10 areas that future thyroid research should focus on as part of a JLP PSP will potentially unlock more vital funding. The National Institute for Health and Care Research (NIHR), for example, has a funding stream for research funders that address any of the JLA PSP research priorities. Potential funders can also be confident that they are supporting research ideas that address agreed-upon research concerns. 

Read our JLA PSP protocol