CONCORD: Cancer survival in five continents

The CONCORD study began in 1999 as an extension of the EUROCARE study, which had just published survival data for patients diagnosed during 1985-89. The objective was a population-based comparison of survival among adults (15-99 years) diagnosed with cancer of the breast (women), colon, rectum or prostate during 1990-94 and followed up to 1999 in Europe and the USA, using standardised quality control, identical analysis for all data sets, and adjustment both for international differences in background mortality by age, sex, race and calendar period and for international differences in the age profile of cancer patients. In the USA, CONCORD covers 42% of the population, and provides a comparison of cancer survival between states and areas covered by the SEER Program and states covered by the National Program of Cancer Registries (NPCR). It offers a wider comparison of cancer survival between blacks and whites than has previously been possible. CONCORD includes data from 31 countries (16 with 100% national coverage) on all five continents. It is the first attempt at a global comparison of cancer survival.
Contact person: Prof. Michel Coleman. Email:michel.coleman@lshtm.ac.uk
Institution: London School of Hygiene and Tropical Medicine, UK
Telephone: +44 20 7927 2478
Web-site: http://csg.lshtm.ac.uk/

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EUROCHIP: European Cancer Health Indicator Project

The EUROCHIP-1 project was first financed by the EU for the period 2001-2003 with the task of creating a list of cancer health indicators on the cancer domains of Prevention, Screening, Macro-economics, Epidemiology and Treatment that should contribute to the European Comprehensive Health Indicators (ECHI) list. In regard to Cancer Treatment in particular, the aspects of “Delay” and “Compliance with guidelines” were highlighted as requiring further investigations on their possibly strong association with the wide inter-country clinical variation in cancer survival. With "EUROCHIP-2, The Action" (2003-2008) the study continued to focus on actions against inequalities in cancer health in the EU, improving information and knowledge in support of cancer control. The study therefore created a logical model on which to develop a system of actions against these inequalities and in order to grant a better access to cancer information and organisations in all European countries. For all fields of investigations the comparison between EU MSs was beneficial to each country involved and consolidated the grounds for health policies in Europe as a whole. The initial network of scientists of EUROCHIP-1 was integrated into a well established network of networks for efficient data collection, analysis, and the dissemination of results in consensus with the European and International scientific community on cancer. The EUROCHIP-2 Network involves 29 European countries in liaison with other networks, international agencies, institutes, NGOs, EU organizations, National Health Ministries, medical and patients’ associations. In the field of Treatment, feasibility studies became a key determinant with respect to the inclusion of “Delay of cancer treatment” and “Compliance with guidelines” in the European Commission Indicators’ List on cancer. Data on breast and colorectal cancers in 12 EU Member States were collected by local or national cancer registries. The EUROCHIP Studies are the first example of comparisons of these indicators across Europe at population level. The year 2008 will see the start of the new EUROCHIP-3. This 3-year-project is aimed to further strengthen the European approach to Public Health for cancer in Europe. One of the 7 Work Packages of the EUROCHIP-3 Project focuses on Population-based Cancer Registry Indicators. This Work Package is designed to improve the health information system by promoting quality and complete population-based cancer registration across all EU27 and to promote the collection of the ECHI health indicators for cancer. This in support of the idea that data from cancer registries in all EU allow EU population-based studies on the diagnostic and clinical procedures performed on cancer patients, and will work well as a basis for actions which shall better guarantee the access to cancer care for all EU citizens. EUROCARE, EUROPREVAL, ENCR are partners of the EUROCHIP Work Package on Cancer Registration.
Contact person: Dr. Andrea Micheli. Email : andrea.micheli@istitutotumori.mi.it
Web site link: http://www.tumori.net/eurochip/

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HAEMACARE: Cancer Registry based Project on Haematologic Malignancies

Haematologic malignancies (HMS) constitute a large proportion of adult blood diseases. Many are chronic, requiring repeated cycles and associated with long-term sequelae. In recent years, important developments have occurred in diagnosis and treatment of HMs, that are likely to modify the natural history of these diseases and improve prognosis in the near future. Survival and prevalence are important indicators of outcomes and the resources required for planning public health provision. Most studies on HM are hospital-based, which means that they are based on selected series of patients. Their results, therefore, may not reflect the general situation of the entire population. Public Health planning therefore requires population-based information, such as that provided by cancer registries. The problem is that the classifications of HMS used be cancer registries are not always up-to-date or compatible and clinical classifications, which now make use of molecular information (cell surface markers, cytogenetics, tumour gene mutations). This project aims to bridge the gap between clinical research and public health information systems. It will be based on the EUROCARE-3 and EUROPREVAL networks, and will profit form the collaboration of EUROCHIP project. Main objective 1. Revision of HM coding procedures used by cancer registries, ensuring strict adherence to ICD-0 morphology codes, and making them consistent with nosologic categories currently used by clinicians. A panel of haematologists and epidemiologists will be constituted for this purpose. 2. Improve public health use of clinical data. Indicators of clinical activity for HMS by country, will be provided, through integration of data from population cancer registries and clinical networks on HMs.
Contact person: Dr. Milena Sant. Email: milena.sant@istitutotumori.mi.it
Web site link: http://www.haemacare.eu

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RARECARE: Surveillance of rare cancers in Europe

This project is intended to help define indicators and collect and analyse relevant data on rare cancers, on a sustainable, long-term basis. It will generate both an operational definition of “rare cancers” and a list of cancers meeting that definition, with multidisciplinary and international agreement. The project will assess and, if required, adapt the validity of statistical methodology used for common cancers in estimating the burden of rare cancers. RARECARE will provide cancer burden indicators with data from population-based cancer registries and produce comparable information on rare cancers across Europe, taking into account the ECHI strategy and EUROSTAT standards for monitoring and surveillance. RARECARE will assess the quality and comparability of data on rare cancers across European countries. For selected rare cancers considered a high priority, an effort will be made to improve data quality by reviewing the information currently collected by cancer registries and disseminating the results, and linking it to other information resources via a specially designed website.
Contact person:Dr. Gemma Gatta. Email:gemma.gatta@istitutotumori.mi.it
Web site link: http://www.rarecare.eu

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