Haematological malignancy research network © www.hmrn.orgv3 April 2014.

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Presentation transcript:

haematological malignancy research network © April 2014

UK cancer registrations 2011 © April 2014

HMRN: where population 3.6 million similar socio-demographic structure to UK age sex affluence/deprivation urban/rural status © April 2014

Index of multiple deprivation: income domain © April 2014

Office for National Statistics (ONS): rural/urban definition © April 2014

HMRN: who © 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

Summary of routine data sources and analysis © April 2014 TreatmentFollow UpPrognosticsDemographicsDiagnostics Survival Prognostics Descriptive Epidemiology Death Certificates Cancer Registrations AetiologyPatient Pathway Health Economics Audit

HMRN: data © April 2014

Using HMRN data © 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

HMRN accrual: (N=18,376) © April 2014 median 70.6 years; range 1 day – 100 years

HMRN incidence © April 2014

HMRN annual incidence rates (per 100,000) © April 2014

Incidence of haematological malignancy subtypes varies with age... © April 2014

...and gender... © April 2014

...but not social class © April 2014 theories on pathogenesis need to explain these patterns

Disease transformation MDS to AMLFL to DLBCL © April 2014 myelodysplastic syndrome (n=650) to acute myeloid leukaemia (n=88) follicular lymphoma (n=543) to diffuse large B-cell lymphoma (n=57)

Lymphoma survival by ICD-O-3: HMRN © April 2014

Diffuse large B-cell lymphoma: HMRN Survival by IPI score (N=1327) © April 2014

DLBCL: HMRN © April 2014

DLBCL survival: HMRN (N=1419) © April 2014 the survival benefit of clinical trials is no longer significant

Follicular lymphoma first line treatment (N=517) © April 2014

Follicular lymphoma first line treatment by stage (N=511) Stage IStage II-IV © April 2014

First line chemotherapy FL: HMRN (N=237) © April 2014

FL to DLBCL pathway © 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

AML patient pathway © 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

HMRN and end-of-life care © April 2014

HMRN and end-of-life care © April 2014

HMRN outcomes in follicular lymphoma © April 2014 Watch & Wait Follicular Lymphoma International Prognostic Index (FLIPI)

AML: survival by first line treatment HMRN (N=749) © April 2014

The problem with clinical trials AML: HMRN (N=886) © April 2014