Planning a Community based Cancer Registry. Cancer Registration: Principles and Methods Edited by Jensen O. M. et al IARC 1991; pages

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1 Planning a Community based Cancer Registry Cancer Registration: Principles and Methods Edited by Jensen O. M. et al IARC 1991; pages

2 Planning a Community based Cancer Registry 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

3 PROJECTED CANCER CASES: Developed Developing

4 Cancer Deaths to tal d e a th s (m illio n s ) high income countries low-middle income countries WHO mortality database and projections

5 Planning a Community based Cancer Registry Estimated ASR(W) Gobocan,2002 Eastern Africa Less developed Female Male More developed ASR(W)

6 GEOGRAPHICAL COVERAGE FOR- CI5IX PERIOD (310) 119/ (710) 86/ (3700) 48/83 28 (520) 10/29 51 (800) 4/16 10 (31) 16/18 Number of countries (total population in millions, 2000) Registries, populations in CI5 IX: accepted/submitted

7 CI5 Volume IX World population covered is 11% (704.5 million) Cancer registries Included /submitted % by Continent Population Coverage million (%) Africa (5/16) 31% 8.8 (1%) Asia (44/77) 57% (4%) Europe (100/120) 83% (33%) North America (54/58) 93% (80%) Oceania (11/13) 85% 23.0 (73%) South and Central America (11/29) 38% 23.0 (4%)

8 Cancer Incidence in Africa from the population based cancer registries Ci5IX

9 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

10 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.

11 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

12 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

13 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

14 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 ) Jensen& Whelan, 1991 Data on cancer incidence has to be collected from all sources of information in the coverage area in starting from

15 GEOGRAPHICAL COVERAGE 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 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 CI5IX, Narratives

16 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.

17 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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19 Population Based Cancer Registry Narrative and population

20 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.

21 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

22 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

23 Large populations Korea National cancer Registry population 48 million Number of cases Male = Female= Small populations Hiroshima 1,13milion Number of cases Male= Female=10.260

24 Intermediate population Size of the population million Number of cases Male= Female=66.532

25 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

26 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

27 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.

28 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.

29 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)

30 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.

31 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.

32 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, N A Egypt, Gharbiah 3,665,524 1, N A 8 10 Tunisia, Central Region 494,800 2,669 NS A ~ 5 8 Case finding, abstracting and coding Hospital in-patient records Public hospital in-patient facilities Private hospital/ clinic in-patient facilities Private hospital/ clinic out-patient facilities Radiotherapy Pathology labs Hematology labs Autopsy Death cert. Screening programs % cases abstracted by registry personnel

33 Classification and coding Site Full title Groupings Short title C00 Malignant neoplasm of lip Lip, Tongue Tongue C01 Base of tongue C01-C02 C03 Malignant neoplasm of gum C03-C06 Mouth C04 C05 Floor of mouth Palate C06 Unspecified parts of mouth

34 Information recorded Yes /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 NOS Benign 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 breast Intraduct ca NOS of breast Lobular ca in situ of breast

35 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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37 Collaborations Organizations of registries International Association of Cancer Registries (IACR) European Network of Cancer Registries (ENCR) (European Union - EU)

38 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.