UK Acromegaly register

The UK Acromegaly Register (UKAR) was established to provide sufficient patient numbers to address key epidemiological and therapeutic issues. The aims and objectives of this project are as follows:
to gather prospective and retrospective data on a large series of patients with acromegaly from across the UK.

• to use this data to provide epidemiological evidence about long-term mortality and morbidity in acromegaly.
• to provide data on results of treatment by surgery, radiotherapy and medical therapy (see publications and summaries below).
• to disseminate this data in peer-reviewed journals, at conferences and to provide feedback to patient support groups.
• to encourage centres to audit their own practice against the national dataset.
• To assess quality of life via patient reported outcomes and questionnaires such as acroQol
• To assess whether acromegaly is affected by protected characteristics such as social deprivation and geographical location

The project started in 1997 but has been owned and managed by the Society for Endocrinology since 2002. Today, more than 20 years after its conception, the UKAR holds data on more than 3500 patients and is the largest collections of acromegaly data in the world. Collection of new information has now been paused to allow Endocrinologists to focus on analysing the data.

Claire Higham
John Wass
Prakash Abraham
John Ayuk
Daniel Flanaghan
Maralyn Druce
Tara Kearney
Steve Orme
Steven Hunter
Ben Loughrey
Aisha Elamin
Sadia Nasir
Laura Sebern
Dr Phillip Monaghan
Steve Harris (The Pituitary Foundation)
Jess Davis (Society for Endocrinology)

• Aberdeen Royal Infirmary
• Royal Group of Hospitals Trust
• Royal Victoria Hospital
• Queen Elizabeth Hospital
• Bradford Teaching Hospitals NHS Trust
• Brighton and Sussex
• University Hospital NHS Trust
• Bristol Royal Infirmary
• Addenbrookes Hospital NHS Foundation Trust
• Cardiff and Vale NHS Trust
• Countess of Chester Hospital
• NHS Foundation Trust
• NHS Tayside
• NHS Lothian
• Royal Devon and Exeter NHS Foundation Trust
• Glasgow Western Infirmary
• Hull Royal Infirmary
• Leeds Teaching Hospitals NHS Trust
• University of Leicester NHS Trust
• Royal Liverpool Broad Green University Hospital NHS
• Barts and the London NHS Trust
• Queen Mary University of London
• Kings College Hospital
• UCLH NHS Foundation Trust
• Christie Hospital NHS Foundation Trust
• Hope Hospital
• Salford Royal NHS Foundation Trust
• Manchester Royal Infirmary
• Newcastle NHS Hospital Foundation Trust
• Norfolk & Norwich University Hospitals NHS Foundation Trust
• Oxford Radcliffe Hospitals NHS Trust
• Plymouth Hospitals NHS Trust
• Lancashire Teaching Hospital NHS Trust
• Royal Hallamshire Hospital
• Sheffield Teaching Hospitals Trust
• Royal Stoke University Hospital
• Watford Hospital
• West Hertfordshire Hospitals NHS Trust
• York Hospital

• Gather prospective and retrospective (2017-2024) data on a large series of patients with acromegaly in UK.
• To use the data to provide epidemiological data about long-term mortality and morbidity in acromegaly
• Provide data on the results of treatment by surgery, radiotherapy and medical therapy.
• Disseminate data in peer-reviewed journals, conferences and feedback to patient support groups.
• Encourage centres to audit own practice against the national dataset.
• Run an assay validation to understand better IGF1 and Growth Hormone discordance.

The ability to use the patient app to reinforce conversations with their clinicians about their health in consultation visits.

The ability to track their own health and medications through the app and learn more about themselves and their health in this manner.

The findings from this study aims to inform clinical practice and ensure optimal treatment regimens for patients, more personalised care.

As the register is currently closed, the recruitment plan is to reopen the register to data collection in 2026 for a further 5 years to create a dataset which covers from 1997-2032. If you are interested in participating as a site please get in touch via [email protected]

Data is made available to researchers, patient support groups, pharmaceutical or medical device companies, and other health care professionals via the data access request form in line with the data access policy of the Society for Endocrinology.

You can find more information about governance here. 

UKAR has previously been funded via grants from Pfizer, Recordati, IDS, Ipsen, Novartis, and Pharmacia

Stereotactic gamma knife radiosurgery as an effective treatment for acromegaly (2014)

Control of growth hormone and IGF1 in patients with acromegaly in the UK: responses to medical treatment with somatostatin analogues and dopamine agonists (2013)

Control of GH and IGF1 in acromegaly in the UK: responses to medical treatment (2012)

Wide variation in surgical outcomes for acromegaly in the UK (2007)

Increased mortality in acromegaly is due to vascular and respiratory disease and is normalised by control of GH levels—A retrospective analysis from the UK Acromegaly Register 1970–2016 (2004)

A study of acromegaly-associated headache with somatostatin analgesia (2023)

Time to first remission and survival in patients with acromegaly: Evidence from the UK Acromegaly Register Study (UKAR) (2012)

Body weight in acromegaly – does it make any difference? (2024)