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haematological malignancy research network © www.hmrn.orgv3 April 2014
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UK cancer registrations 2011 © www.hmrn.orgv3 April 2014
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HMRN: where population 3.6 million similar socio-demographic structure to UK age sex affluence/deprivation urban/rural status © www.hmrn.orgv3 April 2014
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Index of multiple deprivation: income domain © www.hmrn.orgv3 April 2014
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Office for National Statistics (ONS): rural/urban definition © www.hmrn.orgv3 April 2014
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HMRN: who © www.hmrn.orgv3 April 2014 Clinical care Haematology clinical teams Yorkshire Cancer Network Humber & Yorkshire Coast Cancer Network Data management & analysis Epidemiology & Cancer Statistics Group (ECSG) Health Sciences University of York Diagnostics Haematological Malignancy Diagnostic Service (HMDS) St James’s Institute of Oncology Leeds Teaching Hospitals NHS Trust
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Summary of routine data sources and analysis © www.hmrn.orgv3 April 2014 TreatmentFollow UpPrognosticsDemographicsDiagnostics Survival Prognostics Descriptive Epidemiology Death Certificates Cancer Registrations AetiologyPatient Pathway Health Economics Audit
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HMRN: data © www.hmrn.orgv3 April 2014
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Using HMRN data © www.hmrn.orgv3 April 2014 Improving patient care through analysis of the patient pathway Disease Onset Symptoms Help Seeking Referral Diagnosis Treatment Cure Control Progression Disability Death Epidemiology (at population level): – Distribution – Determinants – Treatment – Potential control
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HMRN accrual: 2004-12 (N=18,376) © www.hmrn.orgv3 April 2014 median 70.6 years; range 1 day – 100 years
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HMRN incidence © www.hmrn.orgv3 April 2014
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HMRN annual incidence rates (per 100,000) © www.hmrn.orgv3 April 2014
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Incidence of haematological malignancy subtypes varies with age... © www.hmrn.orgv3 April 2014
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...and gender... © www.hmrn.orgv3 April 2014
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...but not social class © www.hmrn.orgv3 April 2014 theories on pathogenesis need to explain these patterns
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Disease transformation MDS to AMLFL to DLBCL © www.hmrn.orgv3 April 2014 myelodysplastic syndrome (n=650) to acute myeloid leukaemia (n=88) follicular lymphoma (n=543) to diffuse large B-cell lymphoma (n=57)
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Lymphoma survival by ICD-O-3: HMRN 2004-9 © www.hmrn.orgv3 April 2014
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Diffuse large B-cell lymphoma: HMRN 2004-9 Survival by IPI score (N=1327) © www.hmrn.orgv3 April 2014
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DLBCL: HMRN © www.hmrn.orgv3 April 2014
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DLBCL survival: HMRN 2004-9 (N=1419) © www.hmrn.orgv3 April 2014 the survival benefit of clinical trials is no longer significant
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Follicular lymphoma first line treatment (N=517) © www.hmrn.orgv3 April 2014
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Follicular lymphoma first line treatment by stage (N=511) Stage IStage II-IV © www.hmrn.orgv3 April 2014
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First line chemotherapy FL: HMRN 2004-9 (N=237) © www.hmrn.orgv3 April 2014
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FL to DLBCL pathway © www.hmrn.orgv3 April 2014 BEAM: Carmustine + Etoposide + Cytarabine + Melphalan CR: Complete Remission CT: Computerised Tomography DLBCL: Diffuse Large B-Cell Lymphoma FL: Follicular Lymphoma GCSF: Granulocyte Colony Stimulating Factor GEM-P: Gemcitabine + Cisplatin + Methylprednisolone HMDS: Haematological Malignancy Diagnostic Service PD: Progressive Disease PR: Partial Remission R-CHOP: Rituximab + Cyclophosphamide + Doxorubicin + Vincristine R-DHAP: Rituximab + Cisplatin + Cytarabine + Dexamethasone SCH: Stem Cell Harvest SCT: Stem Cell Transplant
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AML patient pathway © www.hmrn.orgv3 April 2014 AML: Acute Myeloid Leukaemia AraC: Cytarabine BC: Baseline Chimerism CDC: Complete Donor Chimerism CR: Complete Remission FC: Fludarabine + Cyclophosphamide FLAG-IDA: Fludarabine + Cytarabine + Idarubicin + HC: Hydroxycarbamide HMDS: Haematological Malignancy Diagnostic Service MC: Mixed Chimerism PD: Progressive Disease RT: Radiotherapy
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HMRN and end-of-life care © www.hmrn.orgv3 April 2014
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HMRN and end-of-life care © www.hmrn.orgv3 April 2014
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HMRN outcomes in follicular lymphoma © www.hmrn.orgv3 April 2014 Watch & Wait Follicular Lymphoma International Prognostic Index (FLIPI)
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AML: survival by first line treatment HMRN 2004-9 (N=749) © www.hmrn.orgv3 April 2014
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The problem with clinical trials AML: HMRN 2004-10 (N=886) © www.hmrn.orgv3 April 2014
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