Speaker: |
Dr Eve Roman, Director of the Epidemiology and Cancer Statistics Group and Professor of Epidemiology at the University of York |
Presentation Title: |
The Haematological Malignancy Research Network: a new strategy for population-based research |
Abstract: |
Haematological malignancies account for around 1 in 10 of all newly diagnosed malignancies in the UK and, with an estimated 63,000 patients alive 5 years after diagnosis, they are currently the most prevalent cancers after breast, prostate and bowel. Unlike many other cancers only a minority of patients receive potentially curative treatments, with many following a trajectory more typically associated with a chronic disease. Curative and life-prolonging therapies are often costly; and the continued emergence of new approaches to diagnosis and treatment means that these cancers top the cancer spend list of most economically developed countries.Haematological oncology is one of the most rapidly evolving areas of cancer research, and more than 60 clinically meaningful diagnostic groups are currently recognized in the latest WHO classification. Comprehensive and reliable population-based data about the underlying occurrence, treatment and survival of patients diagnosed with these cancers are, however, limited; and data are still frequently presented in the historical categories of leukaemia, non-Hodgkin lymphoma, Hodgkin lymphoma and myeloma. To address the need for ‘real-time’ generalizable data to inform contemporary clinical practice and research, the population-based Haematological Malignancy Research Network (www.hmrn.org) was established in two adjacent Yorkshire Cancer Networks in 2004. With nearly 4 million people, representing 6% of the UK population, the socio-demographic composition (age, gender, deprivation) of the regional population mirrors that of the UK as a whole. Within HMRN patient care is provided by 14 hospitals organized into five multi-disciplinary teams (MDTs); and clinical practice adheres to national guidelines. As a matter of policy, all diagnoses (>2,200 a year) are made and coded by clinical specialists at a single integrated haematopathology laboratory – the Haematological Malignancy Diagnostic Service (www.hmds.info); cited in the UK’s Department of Health’s Cancer Reform Strategy as ‘the model for delivery of complex diagnostic services’. HMRN has Section 251 support under the NHS Act 2006, and all patients have full-treatment, response and outcome data collected to clinical trial standards; and all are ‘flagged’ (death and cancer) at the national Medical Research Information Service (MRIS) and routinely linked to Hospital Episode Statistics (HES).This seminar will overview HMRNs data collection and current linkage methods, present some outputs, and discuss challenges and opportunities for the future. |
Booking:
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No need to book, just turn up. |
Lunch will be served at 13.00
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