First global pituitary study gives patients voice on research

18 March 2025

Researchers from Cambridge and London have completed a study that is a world first of its kind and gives patients an important voice on future priorities.

It was led by Angelos Kolias, Consultant Neurosurgeon at the University of Cambridge and Cambridge University Hospitals, and Hani Marcus,Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery and Honorary Associate Professor at the UCL Queen Square Institute of Neurology. They worked jointly with Consultant Endocrinologist, Professor Stephanie Baldeweg from University College London and Mark Gurnell, Professor of Endocrinology at the University of Cambridge.

They reached out to more than 155 patients, carers and healthcare professionals across 14 countries to identify their top 10 questions for researchers going forwards. Key themes to emerge were diagnosis and management to avoid delays, advancing surgical techniques and technologies, patient support and follow-up, and prediction of outcomes and complications.

Findings from the Pituitary Surgery Core Outcomes and Priorities (PitCOP) study, which ran over five stages between March 2023 and July last year, have just been published on the academic platform Springer Nature.

Such studies bring together patients, caregivers, and healthcare professionals to identify and prioritise the research that matters most and aligns interests and objectives of all parties. They also act as a call to action to funders.

To date, there have been several research priority studies covering neurosurgical disease areas, but no studies focusing on the research priorities for pituitary surgery.

It was supported by the University of Cambridge, Cambridge University Hospitals, National Brain Appeal, Wellcome / EPSRC Centre for Interventional and Surgical Sciences, University College London, Pituitary Foundation, and Pituitary Society.

Pituitary adenomas are benign tumours of the pituitary gland, a small gland at the base of the brain. They affect approximately one in 1000 people and can cause a variety of symptoms due to pressure on the eyesight nerves or the pituitary gland. They can cause significant morbidity and even mortality if not treated in time.

Some adenomas may produce excessive levels of a pituitary hormone leading to conditions such as Cushing's syndrome, a condition caused by having too much of a hormone called cortisol, leading to more fat on the chest, stomach, neck or shoulders. The face may be red and puffy. It can also cause acromegaly, which is abnormal growth of the hands, feet, and face.

Surgery, typically undertaken through the nostrils, is the preferred treatment option for most patients.

"We are immensely grateful to all patients who participated in the PitCOP study. The outcomes of pituitary surgery are very good, but we always strive to improve. The participation of patients was critical, as it enabled us to also look outside the operating room. We are hoping that funding agencies will respond appropriately to this call for action". Mr Angelos Kolias
"The findings of the PitCOP study underscore the importance of involving patients directly in shaping the future of pituitary adenoma surgery. By prioritising research that reflects patient needs, we can ensure we are ultimately improving the most relevant outcomes for those affected by these complex conditions". Mr Hani Marcus
"We are very proud of having completed the first ever international study on setting research priorities in pituitary surgery. In my role as Consultant Endocrinologist and as a trustee and chair of clinical committee of The Pituitary Foundation, the UK national pituitary charity, I am acutely aware that we can achieve most when patients and clinicians work closely together. This study should lead to more patient centred pituitary research". Professor Stephanie Baldeweg
"In the last few years, we have developed cutting edge technologies - and are already working with patients, but the priority setting will enable us to systematically integrate the questions of patients in future research projects". Professor Mark Gurnell

First global pituitary study gives patients voice on research

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