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 firstname.lastname@example.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.
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.
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
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