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UK Acromegaly register

Acromegaly is a rare disease with a prevalence estimated at 40 per million and is associated with increased morbidity and mortality.

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.

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 one of 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. If you have a research question and would like to collaborate with us please get in touch with the project Steering Committee at clinical@endocrinology.org.

We want to say a huge thank you to all our recruiting sites, principal investigators, study teams, and participants for your support, time and commitment.  Thank you!

Key Publications (for a full list please contact the UKAR Steering Group)

Robins, James & Ayuk, J. & Trainer, P. & Newell-Price, John. (2014). Stereotactic Gamma Knife Radiosurgery is Effective for the Treatment of Acromegaly. Journal of Neurological Surgery Part B: Skull Base. 75. doi: 10.1055/s-0034-1384025.

This study assessed the effectiveness of a modern radiation therapy technique, Gamma Knife radiosurgery, for treatment of acromegaly. After follow up of around 5 years, 72% of patients achieved safe growth hormone levels and 66% of patients achieved normal IGF1. Importantly, all pituitary tumours stopped growing following treatment. The study concluded Gamma Knife radiosurgery for treatment of acromegaly is a safe and effective long-term adjunctive treatment.

Howlett TA, Willis D, Walker G, Wass JA, Trainer PJ; UK Acromegaly Register Study Group (UKAR-3). Control of growth hormone and IGF1 in patients with acromegaly in the UK: responses to medical treatment with somatostatin analogues and dopamine agonists. Clin Endocrinol (Oxf). 2013 Nov;79(5):689-99. doi: 10.1111/cen.12207.

This study looked at how well acromegaly was controlled in 2572 patients in the UK using growth hormone (GH) and IGF1 levels on and off medical treatment. Somatostatin analogue injections were used in 40·6% of patients and dopamine agonist tablets in 41·4%. The results showed while control of acromegaly in the UK is improving, 'safe' GH levels are still only achieved in 75% of patients on long-term medical treatment, with GH and IGF1 both normalized in no more than 55% on somatostatin analogue injections and 36% on dopamine agonist tablets (cabergoline).

Bates PR, Carson MN, Trainer PJ, Wass JA; UK National Acromegaly Register Study Group (UKAR-2).Wide variation in surgical outcomes for acromegaly in the UK. Clin Endocrinol 2008;68(1):136-42. http://www.ncbi.nlm.nih.gov/pubmed/17803712

This study assessed surgical outcomes for acromegaly in different UK centres in patients presenting between 1970 and 2004, to investigate whether these matched results of the best published series. The percentage of cases with 'safe' growth hormone and/or IGF1 levels after surgery were recorded. The results showed surgical outcomes for acromegaly in UK centres varied widely and only a few centres matched the results of large published series. The results had however improved substantially since 2000 and in the most successful units did match those of the best published series. The study proved experience is an important determinant of surgical success in acromegaly, and the improvement in surgical results in the UK coincided with a trend to concentrate pituitary surgery in the hands of a smaller number of specialists. The recommendation was patients should be offered surgery by a dedicated pituitary surgeon.

Jenkins PJ, Bates P, Carson MN, Stewart PM, Wass JA. Conventional pituitary irradiation is effective in lowering serum growth hormone and insulin-like growth factor-I in patients with acromegaly. J Clin Endocrinol Metab. 2006 Apr; 91(4): 1239-45
http://jcem.endojournals.org/cgi/content/full/91/4/1239

This study examined the effectiveness of conventional pituitary irradiation in reducing circulating growth hormones and IGF1 to safe levels in patients with acromegaly. At the time of publication it was the largest series of patients with acromegaly treated with conventional irradiation. 77% of patients had safe growth hormone levels 20 years after irradiation, with normal IGF1 levels in 63% after 10 years. The study concluded conventional pituitary irradiation is an effective and safe means of reducing both serum growth hormone and IGF1 concentrations in patients with acromegaly.