The Haematological Malignancy Research Network (HMRN): a new information strategy for population based epidemiology and health service research

血液恶性肿瘤研究网络(HMRN):面向人群流行病学和卫生服务研究的新信息战略

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Abstract

The Haematological Malignancy Research Network (HMRN) was established in 2004 to provide robust generalizable data to inform clinical practice and research. It comprises an ongoing population-based cohort of patients newly diagnosed by a single integrated haematopathology laboratory in two adjacent UK Cancer Networks (population 3.6 million). With an emphasis on primary-source data, prognostic factors, sequential treatment/response history, and socio-demographic details are recorded to clinical trial standards. Data on 8131 patients diagnosed over the 4 years 2004-08 are examined here using the latest World Health Organization classification. HMRN captures all diagnoses (adult and paediatric) and the diagnostic age ranged from 4 weeks to 99 years (median 70.4 years). In line with published estimates, first-line clinical trial entry varied widely by disease subtype and age, falling from 59.5% in those aged <15 years to 1.9% in those aged over 75 years - underscoring the need for contextual population-based treatment and response data of the type collected by HMRN. The critical importance of incorporating molecular and prognostic markers into comparative survival analyses is illustrated with reference to diffuse-large B-cell lymphoma, acute myeloid leukaemia and myeloma. With respect to aetiology, several descriptive factors are highlighted and discussed, including the unexplained male predominance evident for most subtypes across all ages.

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