title: Towards optimal clinical and epidemiological registration of haematological malignancies: Guidelines for recording progressions, transformations and multiple diagnoses.
abstract: Haematological malignancies (HM) represent over 6% of the total cancer incidence in Europe and affect all ages, ranging between 45% of all cancers in children and 7% in the elderly. Thirty per cent of childhood cancer deaths are due to HM, 8% in the elderly. Their registration presents specific challenges, mainly because HM may transform or progress in the course of the disease into other types of HM. In the context of cancer registration decisions have to be made about classifying subsequent notifications on the same patient as the same tumour (progression), a transformation or a new tumour registration. Allocation of incidence date and method of diagnosis must also be standardised. We developed European Network of Cancer Registries (ENCR) recommendations providing specific advice for cancer registries to use haematology and molecular laboratories as data sources, conserve the original date of incidence in case of change of diagnosis, make provision for recording both the original as well as transformed tumour and to apply precise rules for recording and counting multiple diagnoses. A reference table advising on codes which reflect a potential transformation or a new tumour is included. This work will help to improve comparability of data produced by population-based cancer registries, which are indispensable for aetiological research, health care planning and clinical research, an increasing important area with the application of targeted therapies.
authors.affiliation: N. Ireland Cancer Registry, Queen's University, Belfast, Northern Ireland, United Kingdom. Electronic address: a.gavin@qub.ac.uk.
authors.forename: Anna
authors.initials: A
authors.lastname: Gavin
authors.affiliation: National Cancer Registration Service, England, United Kingdom.
authors.forename: Brian
authors.initials: B
authors.lastname: Rous
authors.affiliation: Epidemiology Unit and Girona Cancer Registry, Oncology Coordination Plan, Department of Health, Girona, Spain.
authors.forename: Rafael
authors.initials: R
authors.lastname: Marcos-Gragera
authors.affiliation: N. Ireland Cancer Registry, Queen's University, Belfast, Northern Ireland, United Kingdom.
authors.forename: Richard
authors.initials: R
authors.lastname: Middleton
authors.affiliation: International Agency for Research on Cancer, Section of Cancer Information, Lyon, France.
authors.forename: Eva
authors.initials: E
authors.lastname: Steliarova-Foucher
authors.affiliation: Registry of Haematological Malignancies of Cote d'Or, University of Burgundy & University Hospital of Dijon, France.
authors.forename: Marc
authors.initials: M
authors.lastname: Maynadie
authors.affiliation: Eurocourse Work Package 3 Coordinator, Piedmont Cancer Registry, Turin, Italy.
authors.forename: Roberto
authors.initials: R
authors.lastname: Zanetti
authors.affiliation: Registration and Research, Comprehensive Cancer Centre the Netherlands, Utrecht, The Netherlands.
authors.forename: Otto
authors.initials: O
authors.lastname: Visser
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002471:Cell Transformation, Neoplastic / Q000473:pathology; D002648:Child; D002675:Child, Preschool; D018450:Disease Progression; D055088:Early Detection of Cancer / Q000379:methods / Q000706:statistics & numerical data; D062665:Epidemiological Monitoring; D005260:Female; D019337:Hematologic Neoplasms / Q000175:diagnosis / Q000453:epidemiology* / Q000473:pathology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008499:Medical Records / Q000592:standards*; D008875:Middle Aged; D009026:Mortality; D012042:Registries / Q000592:standards*; D055815:Young Adult
keywords: Cancer registration; ENCR; Eurocourse; Haematology; Transformations