Cancer Registration and its Role in Cancer Epidemiology

8/8/2019 Cancer Registration and its Role in Cancer Epidemiology

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International Agency for Research on Cancer

Lyon, France

Cancer Registration and

its Role in CancerEpidemiology

Hai-Rim Shin ( )

Data Analysis and Interpretation Group


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Outlines

What is cancer registry, registration?

Use of Cancer Registry

Cancer Epidemiology


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Cancer Registry : Registration

Cancer RegistryThe office or institution which is responsible for

the collection, storage, analysis and interpretation ofdata on cancer patients.

Cancer registrationThe process of cont inuing systemat ic col lect ion

of data on the occurrence, characteristics, andoutcome of reportable neoplasms wi th the purpose of helping to assess and control the impact of malignantdisease in the communi ty .


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Cancer Registry

1. Population-based cancer registry(PBCR)

2. Hospital-based cancer registry

3. Pathology registry (tumor registry)


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v Collects information on all newcases of cancer in a defined

populationv The population covered is usually

that of a geographic area

v The main interest is forepidemiology and public health

1. Population-based Cancer Registry


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1. Population-based Cancer Registry

vAll cases in a DEFINED populat ion areregistered

v True (unbiased) profile of cancer in thecommunity Incidence, stage distribution, survival, etc.

v Calculation of incidence rates (becausepopulation at risk is quantified)


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Why population-based cancerregistration?

If the population from which the cases come(population at risk) is know n,

the INCIDENCE RATE can be calculated.

If the population is unknown,

only the PERCENTAGE FREQUENCY of

different cancers in the series can becalculated.


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Comparison of INCIDENCE RATES:

Comparison of PERCENTAGE FREQUENCIES:

A true picture of the difference in riskbetween populations or groups

Only valid if the incidence rates for

all cancers in the populationscompared are identical


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2. Hospital-based Cancer Registry

vAll cases of cancer treated in a given

hospital are recorded

v The population from w hich the cases

come is not defined

v The main interest is clinical care hospitaladministration


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2. Hospital-based Cancer Registry

Addit ional variables:- Contact details

- Admission + Discharge dates

- Hospita l referred from , to

- Physicians (treating, following)

- Diagnostic procedures

- Extent of disease

-Treatment details (first, subsequent)

- Outcome (recurrence)

- Follow - up


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Registrable Cases:

1. ANALYTICAL CASES

Diagnosed in the hospital, but first therapy elsewhere

Diagnosed and treated in the hospital (incl. untreatablecases)

Diagnosed elsewhere, first treatment in the hospital

2. NON-ANALYTICAL CASES

Diagnosed elsewhere, first therapy elsewhere (eg. receivingsupportive care)

Diagnosed and first treatment before start of registry

Diagnosed at autopsy

Non - registrable cases:

eg. consultation only, transient care (eg. on vacation), no currentevidence of cancer (old cases) ...


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3. Pathology Tumor Registry

Information on histologically diagnosedcancers is collected from one or morelaboratories

The population from w hich the tumourtissue has come is not defined

The information has a high diagnosticquality but is difficult to generalize


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Purposes and Uses of CancerRegistration

1 Epidemiological Research

Descriptive Epidemiology

Analytic Epidemiology

2 Health Care Planning and Monitoring

Patient Care

Survival

Screening

Prevention


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EpidemiologyDefinition:

studystudy of t heof t he distributiondistribution andand determinantsdeterminants

of healt hof healt h--related states or events inrelated states or events in

specif ied populat ions,specif ied populat ions,and,and,

t hethe applicationapplication of t his study t o cont rolof t his study t o cont rol

healt h problemshealt h problems


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Epidemiology

Descriptive epidemiology:

Describes the distribution of disease according topersonal characteristics, place, or time

Generates hypothesis

Analytic epidemiology:

Investigates determinants (causes) of disease Tests hypothesis


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Is there an association? (statistics)

Is it causal? (deduction)

EXPOSUREEXPOSURE OUTCOMEOUTCOME

Strategy for investigating cause


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What is an Exposure?

It can be any (measurable) characteristic of an individual.What is actually measured may be more or less distantlyconnected with the actual mechanism of carcinogenesis:

Examples Age

Place of Birth Religion Occupation Habits (eg smok ing, dietary) Actual exposure (eg to infect ion, chemical s...) Tissue levels of chemicals

Amount bound to DNAOR Host factors (making more susceptible/ resistant)

...genetic factors - key enzymes- skin colour


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What is an Outcome?

An EVENT, for wh ich we want to know thedistribution, or cause(s).

In cancer epidemiology, it would usually be:

a new case of cancer

a death from cancer


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Population-based Cancer Registry

CANCER CASES

Person:

Age

Sex Place of

residence

Birthplace

Ethnic group

Religion

Occupation

Marital status

TWO SETS OF DATA

POPULATION AT RISK

Person:

Age

Sex

Place of residence

(Birthplace)

(Ethnic group)

(Religion)

(Occupation)

(Marital status)

Tumour:

Site

Histology Stage

Basis of

diagnosis

Outcome:

Death or survival


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Descriptive Epidemiology

Exposure variables:

PersonPerson Place Time

- Age - Of residence - Date of diagnosis

- Sex - Of treatment - Date of birth- Rel ig ion

- Mari ta l status

- Occupation

- Educat ion

- Parity

- Bir thplace


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Epidemiology

1. Descript ive:

The risk of disease according to characteristics ofindividuals, or over time is described.

The information comes from rout ine sources (registers,records, surveys...).

The variables are non-specific (indirect link to causes).

2. Analytic:

The information i s collected from individual subjects.

The association betw een risk factors [possible causes] anddisease is investigated.


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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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Use of Cancer Registry data

Analyses of cancer registry data

Record linkage studies

Sources of cases for case-control studies

Source of reference rates


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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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Data Sources

Med Records Dept

Outpatient clinic

Pathology lab

Hematology lab

Radiol Oncology

Diagnostic Rad

Health I nsurance

Screening

Death certificates Autopsy

Others


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National Cancer Control Program:a systemic and comprehensive approach

Treatment

Palliative

Care

Early

Detection

Prevention

Cancer

Control

Program

WHO


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Treatment

Palliative

Care

Early

Detection

Prevention

Cancer

Control

Program

WHOThe cancer registry is

an essential part of the cancer control program

National Cancer Control Program:a systemic and comprehensive approach


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Thank you for

your t ime and at t ent ion!

Documents

Cancer Registration and its Role in Cancer Epidemiology