Cancer Registration and its Role on Cancer Epidemiology

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Cancer Registration and its Role on Cancer
Epidemiology

• Maria Paula Curado

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Cancer Registration and its Role on Cancer
Epidemiology

• Outline
• Cancer in World Latin America
• Population Based Cancer Registries
• Cancer Epidemiology

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Cancer Registration and its Role on Cancer
Epidemiology

• Cancer is a leading cause of death around the
  world.
• WHO estimates that 84 million people will die of
  cancer between 2005 and 2015 without
  intervention.
• Approximately 15-20 of cancers worldwide have
  been attributed to infectious agents. However,
  this proportion is higher in low-resource
  countries (26) than in the developed world (8).
  
• http//www.uicc. org/index

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Cancer Registration and its Role on Cancer
Epidemiology

• Population Based Cancer Registries-PBCRs
• Are essential part of any rational programme of
  cancer control ranging from etiological research,
  through primary and secondary prevention to
  health- care planning and patient care, so
  benefiting individuals and society.
• JensenStorm,1991

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Cancer Registration and its Role on Cancer
Epidemiology

• Population Based Cancer Registries-PBCRs
• Aims
• To collect and classify information on all cancer
  cases in order to produce statistics on the
  occurrence of cancer in a defined population and
  to provide a framework for assessing and
  controlling the impact of cancer in the
  community.
• Jensen Storm,1991

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Cancer Registration in Low and Middle Resources
Countries

• Cancer registration aims
• To produce data on cancer Incidence .
• Validate data on cancer Mortality
• Time Trends
• Outcomes in Cancer Survival
• Pathway to cancer Research .
• Support Cancer Control.

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Population Based Cancer Registry

• Sources of cases.
• Hospital, Hospital cancer registries,
• Haematological, Bone marrow centres
• Pathology labs
• Image clinics.
• Private clinics (chemotherapy, radiotherapy)
• General practitioners
• Screening programmes
• Death certificates
• Trials/Research Projects

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Variables recorded
Standard (Obligatory)

• Patient
• Identification number
• Name
• Sex
• Birth date
• Age
• Address
• Age at diagnosis

• Tumor
• Incidence date
• Most valid basis of diagnosis
• Topography (ICDO-3)
• Morphology (ICDO-3)
• Multiple primary flag (IARC, 2004 rules)

From Curado MP, Voti L, Sortino-Rachou AM.
Cancer registration data and quality indicators
in low and middle income countries their
interpretation and potential use for the
improvement of cancer care. Cancer Causes Control
2008
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Population based Cancer Registry

• All cases in a DEFINED population are
  registered
• True (unbiased) profile of cancer in the
  community
• incidence, stage distribution, survival, etc.
• Calculation of incidence rates ( because
  population at risk is quantified )

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Population Based Cancer Registry

• Population denominators
• The availability of accurate and regularly
  published population data.
• Population figures by sex and five years age
  group. Except for Childhood cancer.
• The population cancer registry must use de
  definitions of populations groups, geographical
  areas as they are presented by the official vital
  statistics.

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Large populations
Korea National cancer Registry population 48
million
Small populations
1999-2002-Number of cases Male 241.155 Female183
.620
Hiroshima 1,13milion
1996-2000-Number of cases Male14.450 Female10.26
0
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Intermediate population
Size of the population 5.340.000 million
19982002 Number of cases Male61.586 Female66.53
2
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Cancer Registration

• If the population from which the cases come
  (population at risk) is known
• the INCIDENCE RATE can be calculated
• If the population is unknown
• only the PERCENTAGE FREQUENCY of different
  cancers in the series can be calculated

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Cancer Registration and its Role on Cancer
Epidemiology
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Cancer Registration and its Role on Cancer
Epidemiology

• Epidemiology
• Epidemiology has been defined as the study of the
  distribution and determinants of health- related
  states or eventus in specific populations and the
  application of this study to the control of
  health problems.
• To identify risks factors that may lead to early
  introduction of effective preventive measures
• Last,1988.

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Epidemiology (Study designs)

• Intervention Studies (experiments)
• Cohort Studies
• Case-Control Studies
• Cross sectional (Prevalence) studies
• Ecological Studies

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Purposes and Uses of Cancer Registration Data

• Epidemiological Research
• Descriptive Epidemiology
• Analytic Epidemiology
• Health Care Planning and Monitoring
• Patient Care
• Survival
• Screening
• Prevention

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Epidemiology

• Descriptive epidemiology
• Describes distribution of disease according to
  personal characteristics, place, or time
• Hypothesis generating
• Analytic epidemiology
• Investigates determinants (causes) of disease
• Hypothesis testing

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Cancer Registration and its Role on Cancer
Epidemiology

• Descriptive studies/comparisons
• Number of cases
• ASR (W)/ Crude rates
• Age specific incidence curves
• Ratio by gender
• Rates ethnic groups and migrants
• Times trends
• Survival

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Analysis of cancer registry data

• Geographical variations
• Time trends
• Analyses by sex and ethnic group
• Analysis of other risk factors
• occupation
• place of birth
• civil status
• religion

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Cancer Registration and its Role on Cancer
Epidemiology

• Analytics Studies
• Associations of statistical nature from
  descriptive studies rarely imply in causality and
  hypothesis from such observations must be
  subjected to in depth studies.
• Record linkage.
• Case control-(completeness/representativeness).
• End point for cohort studies.
• Outcomes intervention trials.

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We found that HPV testing was the most objective
and reproducible of all cervical screening tests
and was less demanding in terms of training and
quality assurance. In low-resource settings with
no capacity for colposcopy and histopathological
analysis (e.g., many countries in sub-Saharan
Africa), HPV-positive women without clinical
evidence of invasive cancer could receive
immediate treatment, such as cryotherapy.14
However, since most HPV infections in young women
regress rapidly without causing clinically
significant disease, such an approach raises a
legitimate concern. Hence, HPV testing should not
be used for primary screening of women under 30
years of age.
Sankaranarayanan R, Nene BM, Shastri SS, Jayant
K, Muwonge R, Budukh AM, Hingmire S, Malvi SG,
Thorat R, Kothari A, Chinoy R, Kelkar R, Kane S,
Desai S, Keskar VR, Rajeshwarkar R, Panse N,
Dinshaw KA. HPV screening for cervical cancer in
rural India. N Engl J Med. 2009 Apr
2360(14)1385-94. PubMed PMID 19339719.
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Cancer Registration and its Role on Cancer
Epidemiology

• Health care planking and monitoring
• Statistical information on from the cancer
  registry on the number of cases this may be used
  for the planning and establishment of cancer
  treatment and care facilities.
• Geographical differences in cancer occurrence
• Knowledge in trends can be used to project
  treatments and prevention

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BREAST CANCER IN SWEDEN
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Breast Cancer
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Cancer Registration and its Role on Cancer
Epidemiology

• Health care planing and monitoring
• Patient care Cancer registries contribute
  indirectly to the patient care by describing
  pathways of referral or assisting in the follow
  up.
• Survival Many cancer registries do the follow up
  of each patient for death and information in
  cause of death.
• Screening registries can monitor effectiveness
  on cancer screening by collecting non invasive
  cases make possible to compare the decrease of
  the invasive neoplasias.

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