Rationale and design of a UK database for a rare cancer type: the GEM Registry for gastrointestinal stromal tumours

• Published in: British journal of cancer Vol. 109; no. 6; pp. 1403 - 1407
• Main Authors: Bulusu, V R, Fullarton, J, Leahy, M, Morgan, C, Rasheed, A, Taniere, P, Toh, S, Verrill, M, White, J, Judson, I
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 17.09.2013; Nature Publishing Group
• Subjects: 631/114/129; 692/699/67/1504; 692/700/179; Adult; Biological and medical sciences; Biomedical and Life Sciences; Biomedicine; Cancer; Cancer Research; Clinical medicine; Clinical Study; Data Collection; Databases, Factual; Drug Resistance; Epidemiology; Female; Gastroenterology. Liver. Pancreas. Abdomen; Gastrointestinal Stromal Tumors - drug therapy; Gastrointestinal Stromal Tumors - epidemiology; Hospitals; Humans; Incidence; Male; Medical sciences; Metastasis; Molecular Medicine; Multiple tumors. Solid tumors. Tumors in childhood (general aspects); Oncology; Patients; Prevalence; Registries; Stomach. Duodenum. Small intestine. Colon. Rectum. Anus; Treatment Outcome; Tumors; United Kingdom - epidemiology; United Kingdom; Europe; United Kingdom > UK; sunitinib; registry; imatinib; GIST; tyrosine kinase inhibitor; gastrointestinal stromal tumour; Antineoplastic agent; Imatinib; Enzyme; Tyrosine kinase inhibitor; Transferases; Enzyme inhibitor; Malignant tumor; Gastrointestinal stromal tumor; Sunitinib; Cancerology; Register; Database; Digestive diseases; Intestinal disease; Multikinase inhibitor; Antiangiogenic agent; Protein-tyrosine kinase; Cancer; Gastric disease
• ISSN: 0007-0920; 1532-1827
• DOI: 10.1038/bjc.2013.406

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. Conclusion: 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.