UK Acromegaly Registry

Background
Aims
Protocol
Ethics
Governance
Sponsors
Impact of project
Publications
Support information

Background

Acromegaly is a rare disease with a prevalence estimated at 40 per million. It is apparent that the condition 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 project started in 1997 as a standalone project with 8 centres. In 2002 it became a Society for Endocrinology project. It is managed by a Steering Committee of eight members, appointed by the Society's Clinical Committee. Currently some 2700 of an estimated 3000 UK patients have been entered, from 27 centres. The project has been adopted by the UK Clinical Research Network (UKCRN ID 6687). More details are available at http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=6687

Aims

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.

Protocol

Patients

The inclusion criteria for the study is any UK adult who has been diagnosed with acromegaly from 1970 onwards. Patients can be identified at routine clinic appointments or by analysis of hospital records.

Method

Data from the patient’s records is entered on to the national register. Annually a blood sample for centralised GH and IGF-I is taken. In order to obtain information on the causes of morbidity in patients with acromegaly, participants in the study are flagged with the NHS information centre (England and Wales) and Information & Statistics Division (Scotland)

Database

The original register was developed for the collection of data for a number of pituitary diseases, including acromegaly. The database software was rewritten in 2008, with a flexible specification, which will enable it to adapt to changes in treatment. The rewrite also sought to be as compatible as possible with wider developments in IT within the UK National Health Service. The central register is hosted on a stand alone secure server at the Society for Endocrinology, who provide support and development.

Ownership of data

The central data will be owned by the Society for Endocrinology.

Use of data

Each centre may use the data on its own patients. Applications to use national data should be submitted to the steering committee. All publications, including abstracts, will have a lead author(s) for and on behalf of the UK Acromegaly Register. All participants, including data entry personnel, should be acknowledged. All publications must be submitted to the steering committee for prior approval.

Ethics

All data is collected, stored and used in strict accordance with current UK legislation on data protection, ethics and written informed patient consent. The study has MREC approval (MREC 03/5/076).

Governance

All principal investigators should be members of the Society for Endocrinology. A Steering committee of eight participants is appointed by the Clinical Committee of the Society for Endocrinology and functions as a Sub-committee of the Clinical Committee. Members serve a term of three years, renewable for a further three years at the discretion of the Clinical Committee. The Clinical Committee appoint a chair from amongst the steering committee, whose term will also be three years, renewable.

The steering committee meet twice per year. Its remit is to set targets for achievable research aims within set periods of time and to ensure that these targets are met. It also reviews the accounts annually and refers them to the Clinical Committee for approval, with any comments.

There is an annual meeting of the project to which all participants are invited. A project update is given at this meeting and the outcome of research and/or audit originating from the Register.

Sponsors

IPSEN

Clinical Endocrinology Trust
The Society are grateful to Ipsen Ltd and the Clinical Endocrinology Trust for financial support of the Register

Impact of project

Impact of Acromegaly (pdf) (50kb)

Publications

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.
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
http://jcem.endojournals.org/cgi/content/full/91/4/1239

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

Support information

The following downloadable files are available which provided further background:

The Endocrinologist Article 2006 issue 82

The Endocrinologist Article 2003 issue 68

Recent project newsletters

Acrobat Icon Issue 14 Spring 2011 Newsletter (pdf) (70kb)

Acrobat Icon Issue 13 Winter 2010 Newsletter (pdf) (70kb)

Acrobat Icon Issue 12 Spring 2009 Newsletter (pdf) (70kb)

Acrobat Icon Issue 11 Spring 2008 Newsletter (pdf) (63kb)

Acrobat Icon Issue 10 Summer 2007 Newsletter (pdf) (63kb)

Acrobat Icon Issue 9 Winter 2007 Newsletter (pdf) (70kb)

Acrobat Icon Issue 8 Autumn 2006 Newsletter (pdf) (70kb)

Further information on the project is available from:

Dr Debbie Willis
Project Manager
email: Debbie Willis

Information Technology
Society for Endocrinology
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