8 April,2009

Planning a Community based Cancer Registry

Cancer Registration: Principles and Methods Edited by Jensen O. M. et al IARC

1991; pages 22 – 28.

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– The World Health Organization estimates that 7,6 million people died of Cancer in 2005 and 84 million people will die in the next 10 years if action is not taken.

– More than 70% of all Cancers Deaths occurs in Low and Medium Income Countries , where resources available for prevention, diagnosis and treatment of cancer are limited or non existent.

Cancer Control: Knowledge In Action: WHO,2006

Planning a Community based Cancer Registry

8 April,2009

0 50 100 150 200

Developing

Developed

205020202000

PROJECTED CANCER CASES: 2000-2050

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2.1 2.3

5.56.7

0

2

4

6

8

10

2005 2015

tota

l dea

ths

(mill

ions

)

high income countries low-middle income countries

Cancer Deaths

9.07.6

WHO mortality database and projections

8 April,2009

Planning a Community based Cancer Registry

Estimated ASR(W) Gobocan,2002

314.1

158.7

158.7

228

128.8

156.7

0 50 100 150 200 250 300 350

More developed

Less developed

Eastern Africa

ASR(W)

Female

Male

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38 (710)86/105

45 (3700)48/83

Number of countries (total population in millions, 2000)Registries, populations in CI5 IX: accepted/submitted

10 (31)16/18

51 (800)4/16

28 (520)10/29

3 (310)119/136

GEOGRAPHICAL COVERAGE FOR- CI5IXPERIOD -1998-2002

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CI5 Volume IX 1998-2002CI5 Volume IX 1998-2002World population covered is 11%World population covered is 11%

(704.5 million) (704.5 million)

Cancer registries Included /submitted

% by

Continent

Population Coverage

million (%)

Africa (5/16) 31% 8.8 (1%)

Asia (44/77) 57% 152.3 (4%)

Europe (100/120) 83% 238.8 (33%)

North America (54/58) 93% 258.5 (80%)

Oceania (11/13) 85% 23.0 (73%)

South and Central America

(11/29) 38% 23.0 (4%)

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Cancer Incidence in Africa from the population based cancer registries

Ci5IX-1998-2002

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Cancer registry

•“The activity of a Population Cancer Registry is to collects information on all new cases cancer in a reference population, usually that of a defined geographical area.”

•“The minimal objectives are: incidence rates, planning and evaluation of cancer control program and survival.”

Jensen& Storm, 1991

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Cancer Registry

•Aims:

• To produce data on cancer INCIDENCE .

• Validate data on cancer MORTALITY.

• Time TRENDS

• Outcomes in Cancer SURVIVAL,

• Pathway to cancer RESEARCH .

• Instrument to support Cancer Control.

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Planning a Community based Cancer Registry

• Definition of cancer registry

• Advisory committee

• Population denominators

• Legal aspects on confidentiality

• Size of population and number of cases

• Physical Location of the registry

• Finance

• Personnel

• Equipment and office space

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Planning a Community based Cancer Registry

• Definition of cancer registry

• Cancer Registration is a process of continuing, systematic collection of data on the occurrence and characteristics of reportable malignant neoplasm with the purpose of helping to asses and control the impact of cancer in the

community.

Jensen& Whelan, 1991

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Planning a Community based Cancer Registry

• Cancer Registry

• Cancer Registry is an office or institution which attempts to collect, store, analyse and interpret data on persons with diagnosis of cancer .(or tumours )

–Ex urinary tract papilomas, brain tumours.Jensen& Whelan, 1991

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Planning a Community based Cancer Registry

• Population Based Cancer Registry

• The population based cancer registry collect information of all new cancer cases in defined population( most frequently in a geographical area )

–Data on cancer incidence has to be collected from all sources of information in the coverage area in starting from

Jensen& Whelan, 1991

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• New York State Cancer Registry, United States

• Registration area• The New York State Cancer Registry (NYSCR) contains reports on

all malignant tumors (except basal cell and squamous cell skin cancers), most in situ lesions, and certain benign tumors. The Registry, which is the second oldest state tumor registry in the United States, has had mandated cancer reporting since 1940. At the time of its founding, the registration area covered the entire state except New York City. Beginning in 1973, the reporting mandate was extended to include New York City. The Registry

is considered to be population-based since 1976.

GEOGRAPHICAL COVERAGE

CI5IX, Narratives www.dep.iarc

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Planning a Population Based Registry

• Advisory committee:

• It is board composed by cancer registry personnel, epidemiologist, pathologist, oncologist, and representing from the source of information and potential users of cancer registry data.

• They can be a link to establish cooperation and support with the local medical community and health care professionals.

8 April,2009

Planning a Population Based 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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8 April,2009

Population Based Cancer Registry Narrative and population

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Planning a Population Based Registry

• Legal aspects on confidentiality

• Reporting a cancer cases to a population based cancer registry can be:– Compulsory.– By Legislation.– Administrative order.

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Planning a Population Based Registry

• Size of a population and number of cases

• There is no ideal size for a population cancer registry.

• most of the cancer registry operates with a source of population from one to half a million

8 April,2009

Planning a Population Based Registry

• Size of a population and number of cases

• Large populations – difficult to maintain completeness and data quality.

• Small populations – takes time to get meaningful data.

• Intermediate population – linkage with vital statistics

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Korea National cancer Registry – population 48 million

Hiroshima 1,13milion

Large populations

Small populations

1999-2002-Number of casesMale =241.155Female=183.620

1996-2000-Number of casesMale=14.450Female=10.260

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Size of the population 5.340.000 million

Intermediate population

1998—2002Number of casesMale=61.586Female=66.532

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Planning a Population Based Registry

• Size of a population and number of cases

• It depends of the size of the country it is preferable to establish a intermediate cancer registries to ensure completeness and data quality

8 April,2009

Planning a Population Based Registry

• Physical Location of the registry• The location of the cancer registry

depends of the local situation – Universities – Associated hospital – Cancer centre – Pathology labs – Health statistics – Ministry of Health

8 April,2009

Planning a Population Based Registry

• Physical Location of the registry• • The location is intimately linked to the administrative

dependency of the cancer registry.

• Has to be able to request demographic data and to obtain detailed information from the medical sources in the region and to the governmental health services either professional groups.

• The cancer registry should be autonomous as possible to interact and collaborate nationally and internationally.

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Planning a Population Based Registry

•Finance• Funds to maintain a cancer registry

depends on:

• The size of the cancer registry.

• The number of data collected.

• The number and size of the different sources of information.

• If the registries do a regular follow up of the cases.

• The costs of the cancer registration increases over the time.– Increase the number of cases, sources of information, more

space, additional staff etc.

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Planning a Population Based Registry

• Personnel• The leadership of the coordinator is a key

for the success.• Technical Staff- Registrar.

– Training in cancer registration.– Collect data, Code, Check consistency– Software to input data.– The number of staff depends on the size of the

population coverage.– One staff to cover 1000 cases occurring annually in the

population.( Active data collection)

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Planning a Population Based Registry

• Personnel• Qualifications:

• Technical training and experience• Coordinator can be: Medically qualified with a background

in epidemiology, public heath or Oncology. • Consultants to advise on pathology, clinical oncology,

Epidemiology, and Statistics.• Technical staff:• Registrars responsible for cases findings, abstracting, code

with specific training course.• Data processors are needed depending on the size of the

cancer registry.

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Planning a Population Based Registry

• Personnel• Qualifications:

• Technical training and experience• Coordinator can be: Medically qualified with a background

in epidemiology, public heath or Oncology. • Consultants to advise on pathology, clinical oncology,

Epidemiology, and Statistics.• Technical staff:• Registrars responsible for cases findings, abstracting, code

with specific training course.• Data processors are needed depending on the size of the

cancer registry.

8 April,2009

Techniques of registration Population Surface area Latitude Year Year Cancer * % cases treated

outside registration area

% non-residents treated inside registration area

Africa                

Algeria, Setif 1,365,488 6,504 35° N 1986 1986 A 60 20

Egypt, Gharbiah 3,665,524 1,943 31° N 1998 1999 A 8 10

Tunisia, Central Region 494,800 2,669 NS 1987 1989 A ~ 5 8

Case finding, abstracting and coding

Hospital in-patient recordsPublic hospital in-patient facilitiesPrivate hospital/clinic in-patient facilitiesPrivate hospital/clinic out-patient facilitiesRadiotherapy

Pathology labsHematology labs AutopsyDeath cert.

Screening programs% cases abstracted by registry personnel

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Classification and coding

MouthC03-C06 Malignant neoplasm of gum

Floor of mouth

Palate

Unspecified parts of mouth

C03

C04

C05

C06

Tongue Lip, Tongue

C01-C02 Malignant neoplasm of lip

Base of tongue

C00

C01

Short title Groupings Full titleSite

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Information recordedYes /Not

Basic Date of birth ID no

Incidence date

Ethnic group/race/colour

Stage of disease Nature of 1st treatment

Brain and nervous system

Follow-up for vital status: all/selected/none

Death certificates used to update vital status

Active follow-up of alive cases

Recoded to behaviour /3

Ca of Bladder, in situ Ca of bladder NOSBenign tumours of brain and nervous system

Borderline tumour, unc and unk behaviour of ovary Borderline tumour, unc and unk behaviour of endometrium Borderline tumour, unc and unk behaviour of brain

Ductal ca in situ of breastIntraduct ca NOS of breastLobular ca in situ of breast

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Planning a Population Based Registry

•Equipment and office space

• It depends of the size and activities of the cancer registry.

• Storage - secure space for case documents especially if the cancer registry is manually operating.

• If the cancer registry is connected to a sever it is necessary to do standards procedures to ensure data confidentiality.

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CollaborationsCollaborationsOrganizations of registries

• International Association of Cancer Registries (IACR)

• European Network of Cancer Registries (ENCR)

(European Union - EU)

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Planning a Population Based Registry

• Conclusions

• To know the cancer incidence is should be stressed in a cancer control program

• The cancer registry is must be a continuous activity linked to cancer control and cancer research.