title: Rationale and design of a UK database for a rare cancer type: the GEM Registry for gastrointestinal stromal tumours.
abstract: BACKGROUND
  Despite advances in the management of and changes in clinical practice, little is known about the epidemiology, patterns of care and outcomes of gastrointestinal stromal tumour (GIST) patients in the UK. Patient registries are receiving increasing attention as they can provide important information on clinical practice and patient outcomes. The rationale and study design of the GIST Epidemiology and Management (GEM) Registry, which forms part of the routine clinical practice for GISTs in several UK centres, are described.
  
  
  METHODS
  The GEM Registry is a secure web-based registry system designed around a Microsoft Access core using SQL interface. Demographic, surgical, histopathological and clinical data will be captured including treatment outcomes and survival. The registry was piloted in six centres and following further fine tuning of the data sets, ethical committee submission and approval was completed.
  
  
  RESULTS
  The GEM National Registry is the first of its kind to be implemented in rare cancers in UK. The registry is being rolled out initially in selected centres with the aim to expand to other centres. The first publication reporting analyses of the central data set is anticipated for the summer of 2013.
  
  
  CONCLUSIONS
  GEM Registry will enable us to obtain a clear picture of incidence/prevalence of GISTS in UK. Clinicians will be able to review the prognostic and predictive value of variables in a large prospective data set. The data can be used for planning the delivery and improving the quality of care. This information is likely to inform clinical practice and, in years to come, guide the development and implementation of clinical trials for novel tyrosine kinase inhibitors. The results will not only benefit the GIST community, but also serve as a basis for the study of other rare tumour types.
authors: Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
authors: V R
authors: VR
authors: Bulusu
authors: J
authors: J
authors: Fullarton
authors: M
authors: M
authors: Leahy
authors: C
authors: C
authors: Morgan
authors: A
authors: A
authors: Rasheed
authors: P
authors: P
authors: Taniere
authors: S
authors: S
authors: Toh
authors: M
authors: M
authors: Verrill
authors: J
authors: J
authors: White
authors: I
authors: I
authors: Judson
mesh_terms: D000328:Adult; D003625:Data Collection; D016208:Databases, Factual; D005260:Female; D046152:Gastrointestinal Stromal Tumors / Q000188:drug therapy / Q000453:epidemiology*; D006801:Humans; D015994:Incidence; D008297:Male; D015995:Prevalence; D012042:Registries; D016896:Treatment Outcome; D006113:United Kingdom / Q000453:epidemiology
references: Science. 1998 Jan 23;279(5350):577-80
references: 9438854
references: BMC Cancer. 2012 Mar 19;12:90
references: 22429770
references: Ann Oncol. 2011 Nov;22(11):2523-2529
references: 21464155
references: Int J Cancer. 2005 Nov 1;117(2):289-93
references: 15900576
references: Cancer. 2005 Feb 15;103(4):821-9
references: 15648083
references: Virchows Arch. 2001 Jan;438(1):1-12
references: 11213830
references: Am J Pathol. 2004 Jul;165(1):107-13
references: 15215166
references: J Korean Med Sci. 2005 Dec;20(6):977-84
references: 16361808
references: Nat Rev Cancer. 2011 Nov 17;11(12):865-78
references: 22089421
references: N Engl J Med. 2001 Apr 5;344(14):1052-6
references: 11287975
references: Neoplasma. 2009;56(5):459-64
references: 19580350
references: Curr Opin Oncol. 2010 Jul;22(4):347-50
references: 20485167
references: Lancet. 2006 Oct 14;368(9544):1329-38
references: 17046465
references: Semin Diagn Pathol. 2006 May;23(2):70-83
references: 17193820
references: Hum Pathol. 2002 May;33(5):459-65
references: 12094370
references: Ann Surg. 2000 Jan;231(1):51-8
references: 10636102
references: Radiology. 2003 Feb;226(2):527-32
references: 12563150
references: Lancet Oncol. 2010 Oct;11(10):910-1
references: 20864404
references: Arch Pathol Lab Med. 2006 Oct;130(10):1466-78
references: 17090188