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 the 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 twenty years after its conception, the UKAR holds data on more than 3,500 patients and is the largest collection of acromegaly data in the world.
The collection of new information has now been paused to allow Endocrinologists to focus on analysing the data.
