5.3.2 Data sources
5.3.2.1 Cancer
Registration
Population-based cancer registries (CR) collect data on
all new cases of cancer occurring in a well-defined population, with the goal
of improving cancer control. Today, 15 of the EU-27 Member States (MSs) have
national cancer registration coverage, while in other countries regional CRs
cover up to 30% of the national population. However in Europe some Member
States do not have yet an European recognised cancer registry (Luxembourg,
Greece, Romania, Hungary). Various bodies provide national, regional and
Europe-wide coordination.
Cancer Registry roles and functions (Zanetti and Primic-Zakelj, 2007)
Unlike other communicable diseases, registration for
cancer is not usually based on notifications by single clinicians, but it is
run (where possible) via electronic notifications from several sources (e.g.
district hospitals, cancer centres, hospices, private hospitals, screening
registries, other CRs, primary care facilities, nursing homes and death
certificates). Data refer to entire population covered by the CR and are
frequently sent from different divisions (e.g. pathology departments, medical
records and radiotherapy databases) within a single institution. The population
level cancer patient data are becoming more and more useful for several
reasons:
·
Measuring
the burden and the public health impact of cancer: the minimal role of any
cancer registry is the provision of timely and robust data on cancer incidence,
survival (following up incident cases for a given time after diagnosis) and
prevalence. ENCR has developed recommendations for the standard data set to be
routinely recorded for all cancer patients. For those countries with regional
coverage, statistical techniques are available by IARC and ENCR to obtain
national estimates of cancer incidence from networks of regional registries.
While European cancer survival figures are provided by the EUROCARE project
(Capocaccia et al, 2003; Sant et al, 2003; Berrino et al, 2007)
·
Contributing
to the evaluation of screening programmes: a number of EU cancer registries
already contribute to the efficient evaluation of screening programmes. Others
could do so by providing the following data:
-
early
indicators: screen-detected incidence as a proportion of general population
incidence, number of interval cases, follow-up of cases after migration or
lapsed attendance to screening programmes;
-
impact
indicators: down-staging of incident cases; reversal of initial prevalent wave
of cases after screening introduction; trends in mortality among screened
subjects and the general population.
·
Evaluating
the impact of environmental and social factors on cancer risk and outcomes, and
supporting investigations into the causes of cancer. For instance, thanks to
cancer registration we know that:
-
mesothelioma
is caused by exposure to asbestos;
-
lymphoma
and oral cancer rates are higher in ethnic minorities;
-
cancer
survival for patients living in poor areas is lower than for those living in
rich areas; and
·
Evaluating
the quality of cancer care by providing comparative data about treatment
patterns and outcomes, access to treatment between social groups. To perform
these studies additional data, such as details on treatment, quality of life,
hospitalisation or cost per case have to be collected by CRs. They usually
perform ad hoc studies on representative samples of registered cases.
·
Providing
information in support of cancer genetic counselling services for individuals
and families at higher risk of developing cancer. People are often worried that
their family history may put them at high risk of cancer. The CR is often asked
by clinical geneticists to confirm the details of a cancer diagnosis in a
relative of someone attending their clinic.
Problems and possible solutions for Cancer Registration
in the EU
About one hundred cancer registries operate in Europe
today, playing a key role in public health, but not all the EU-27 Member States
have national cancer registration coverage (see above). Yet in several EU
Member States, severe constraints on registry operation have been imposed by
statute laws or professional roll regulations. These constraints were intended
to improve patient confidentiality, but in some cases they failed to take
account of their impact on public health. As a consequence, several cancer
registries closed down as in the former West Germany (1991), in the former East
Germany (1991), in Hungary (1992); moreover, data protection issues impacted
on the flow of data to cancer registries also in the UK (2000). In other cases
registries are prevented from linking death certificates with cancer records.
For example in Estonia, this has created a paradox: cancer registration and
death registration are both statutory, but cancer survival analysis is illegal.
Lack of dedicated funds or specialised structures for
registration are the two main reasons for insufficient registry activity in the
EU. The cost of human and capital resources required as national investment for
cancer registration is relatively low if we consider that registration is
essential for basic, epidemiological, aetiological and bio-bank-clinical
research, for studies on molecular and genetic epidemiology and on patients’
quality of life. For all of the above, a cancer registry or a registry network
should be established in every country.
Support to cancer registration in all Member States is
needed to remove legal constraints in the interest of public health. This would
create harmonised cancer registry procedures and efficient cancer control
monitoring across Europe. Cancer Registries should be further developed and
involved in the impact evaluation of cancer screening and cancer treatment
programmes:
·
the
EU should recommend that all Member States make cancer registration a statutory
requirement as a public health tool for evaluation of cancer control, including
incidence, screening and survival;
·
EU-wide
standards should be defined for the minimal and optimal sample size and design
for establishing cancer registration in countries where is currently absent.
In 2007 the EUROCHIP Project gave voice to the European
scientific community in a document addresses to the European Commission Network
of Competent Authorities and Network of Working Party Leaders to consider CRs
as important as National Institutes of Statistics. EUROCHIP Recommendations
highlight that:
·
cancer
registries are necessary for cancer control and epidemiological research,
public health programme planning, and patient care improvement;
·
cancer
registry provide standardized data comparable across Europe;
·
cancer
registries are essential to implement Cancer Health Information System in the
European Union;
·
cancer
registries are unique providers of cancer data at population level;
·
cancer
registries need to be maintained and supported;
·
cancer
registries need ad-hoc national privacy restricting legislations;
·
cancer
registries should be recognised a role comparable to that of National
Institutes of Statistics;
·
European
projects connecting cancer registries are the best tools for the comparison of
cancer burden in EU.
5.3.2.2 Data from
European networks and projects
This chapter uses data, information and results coming
from various cancer organisations, networks and projects:
IARC - International Agency of Research on Cancer: IARC is part of the World Health
Organization and its mission is to coordinate and conduct research on the
causes of human cancer, the mechanisms of carcinogenesis, and to develop
scientific strategies for cancer control. The Agency is involved in both
epidemiological and laboratory research and disseminates scientific information
through publications, meetings, courses, and fellowships. IARC is responsible
to publish the volume of “Cancer Incidence in V Continents” and to produce
national estimates of cancer incidence. See: http://www.iarc.fr
ENCR – European Network of Cancer Registries: ENCR is concerned with the teaching of
cancer registrars, definition of registration guidelines, collection of data on
defined indicators, developing recommendations for proper monitoring of the
cancer burden and for promote the use of cancer registries in cancer control,
health-care planning and research. See: http://www.encr.com.fr/
EUROCHIP I and II: The EUROCHIP project is funded by the European
Commission to address inequalities in cancer information in Europe and is a
recognised European imprimatur network helping all EU Member States to improve
a better access to organised information and knowledge on cancer across the EU.
The specific aim of EUROCHIP is to set up a Europe-wide cancer surveillance
system to describe differences, identity problems and promote actions to reduce
inequalities in cancer care, by extending collaboration, establishing or
strengthening health information systems. See: www.tumori.net/eurochip/
EUROCARE – Cancer survival in Europe: The EUROCARE project was set to measure
and explain differences in cancer survival rates across Europe. A further aim
is to compare practices in diagnosis and therapy so as to interpret these
differences. The four phases of the project extended throughout the 1990s and
into the current decade. See: http://www.eurocare.it/
EUROCAN+ Plus. The IARC project, subsidized by the European
Commission and started in 2005, involves Denmark, France, Hungary, Ireland,
Spain (Andalusia and Catalunia), Switzerland, the Netherlands and the United
Kingdom. The objectives of EUROCAN+PLUS are: identify barriers to collaboration
in research and recommend methods of overcoming these hurdles to improve cancer
research in Europe; analysis and synthesis of National Cancer Plans in Europe;
evaluation of potential contribution to EU 2015 Cancer Target; development of a
common European Union Cancer Plan; evaluation of potential contribution to EU
2015 Cancer Target. See: http://www.eurocanplus.org/puDeliverable01.php
MOSES II: The European Society for Medical Oncology (ESMO) addresses global
inequalities in cancer care and practice in Europe. ESMO performed the ‘MOSES’
(Medical Oncology Status in Europe Survey) Project. It collected detailed
information about the status of medical oncology in Europe through
questionnaires. MOSES-II, by the end of 2005, collected data from 34 European
countries regarding teaching and continuing medical education, existing
facilities, clinical research, patterns of care, national societies/registries
and guidelines on cancer. See: http://www.esmo.org/resources/surveys/mosesII_survey/
