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 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.
- 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.
Howlett TA, Willis D, Walker G, Wass J, Trainer PJ & UK National Acromegaly Register Investigators 2012. Control of GH and IGF1 in acromegaly in the UK: Responses to medical treatmentICE/ECE 2012 P1427
Howlett TA, Willis D, Walker G, Wass J, Trainer PJ & UK National Acromegaly Register Investigators 2012. Control of GH and IGF1 in acromegaly in the UK: Responses to medical treatmentSfE BES 2012 OC5.8.
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.
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
J A H Wass, M N Carson and P Bates. The Changing Patterns of Presentation and treatment of Acromegaly in the UK as reflected by the UK National Acromegaly Database. BES 2004 [PDF] reprinted from Endocrine Abstracts 7 P125
MN Carson. The UK National Acromegaly Database. BES March 2003 P47
P R Bates, M N Carson and J A Wass Surgical Outcomes for Acromegaly Vary Widely: A Report on Behalf of the UK National Acromegaly Study Group. American Endocrine Society Endo 2002 P2-179
M N Carson, P Bates and J A H Wass. Somatostatin Analog Therapy for Acromegaly in Clinical Practice: A Report on Behalf of the UK National Pituitary Database. American Endocrine Society, 20-23 June 2001 P2-190
P J. Jenkins, E Elliot, M Carson, R N Clayton, J A H Wass. On behalf of The UK National Acromegaly Register Study Group. Use of a National Database to Explore the Effects of Pituitary Irradiation on Serum GH and IGF-1 in Acromegaly. American Endocrine Society June 2000 P2-163
J A H Wass, M N Carson, P Bates, J S Bevan, M Scanlon, PM Stewart, B Walker, GM Besser, RN Clayton, PJ Jenkins on behalf of The UK National Acromegaly Register Study Group. UK Acromegaly Database – Results of Surgery. BES 13-16th March 2000. P54
P J Jenkins, E L Elliott, M N Carson, P R Bates. On behalf of The UK National Acromegaly Register Study Group The Effects of Pituitary Irradiation on Serum GH and IGF-1 in Acromegaly –Results from the UK National Database. Society for Endocrinology November meeting 8-9 November 1999 OC4
M N Carson'*, J Crompton2, R N Clayton3, J A Wass4. Collecting Data for Acromegaly using the UK Pituitary Register US Endocrine Society ENDO 1999
M N Carson', J Crompton2, R N Clayton3 and J A H Wass. The UK Pituitary register; Collecting Data for Acromegaly. BES 12-15 April 1999, P 50
M N Carson, J Crompton, B Ricketts and B R Walker. Lessons from Establishing a Computer Database of Patients with Pituitary Disease. American Endocrine Society Endo 1998
M N Carson, J Crompton, B Ricketts and B R Walker. Lessons from Establishing a Computer Database for Management of Patients with Pituitary Disease. BES 1998 P193
Impact of project