HAEMACARE - Cancer Registry Based project on Haematologic malignancies

BACKGROUND AND RATIONALE

Haematological malignancies (lymphomas, leukaemias and multiple myeloma) constitute a large fraction of blood diseases in adults. Leukaemias and non-Hodgkin’s lymphomas (NHL) are the commonest haematological malignancies (HM), accounting for 6% of all cancer deaths in the EU. In 1995 estimated incidence in the EU was 6 per 100,000 person/year for NHL; 2 for Hodgkin lymphoma (HL), 4 for multiple myeloma (MM), and 10 for leukaemias. Incidence is higher in northern and western European countries, and lower in the southern and eastern countries.

Mean European 5-year relative survival ranges from 80% for HL, to 33% for MM. There are inter-country survival differences also for potentially curable HM such as HL. The differences can be due to different stage at diagnosis, variation in treatment quality and also in part to variations in the case mix of morphological subtypes.

Many HM are chronic, requiring repeated treatment cycles and associated with long-term sequelae. In recent years, important developments have occurred in diagnosis and treatment of HM, that will likely modify the natural history of these diseases, and improve prognosis in the near future. However most information on HM derives from controlled clinical trials and results may not generalisable to the entire population.

Cancer Registries are the most appropriate tools to evaluate the burden of disease in populations, and they help public health planning. The problem is that the classifications of HM used by Cancer Registries are not always up-to-date or compatible with clinical classifications, which now make use of molecular information (cell surface markers, cytogenetics, tumour gene mutations). HAEMACARE relies on the collaboration of onco-haematologists, pathologists and epidemiologists and is based on a network of population-based European Cancer Registries. The project aims to bridge the gap between clinical research and public health information systems.

 

 

 

Aims

1) Increasing the standardisation and comparability of population Cancer Registries data on HM through:

• increasing the availability of morphology data on HM, ensuring a strict adherence to the most updated ICDO classification, and making them consistent with clinical classifications
• revising the coding practices of Cancer Registries to improve the quality and comparability of cancer registry data
• preparing an international coding manual for HM, that will be diffused to all the European Cancer Registries

2) Providing the following health indicators for haematological malignancies:

• incidence and survival according to specific morphology groups with clinical significance instead of the large categories of HM usually provided by Cancer Registries.
• prevalence, i.e. the number of persons diagnosed with HM alive at a fixed date. These persons represent a part of population with specific health needs, requiring adequate resources.
• proportion of ‘cured’ patients among the overall survivors

3) Developing indicators of clinical activity on HM, also using the information available in clinical data bases and the expertise of the researchers collaborating to the project