Lecture Note
Cancer Registration: Principles And Methods
-
University:
Harvard University -
Course:
CHEM 105 | Advanced Organic Chemistry Academic year:
2025
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Views:
255
Pages:
51
Author:
John Marco
CANCER REGISTRATION :
PRINCIPLES AND METHODS
DR G. ENOW-OROCK
DIRECTOR
YAOUNDE CANCER REGISTRY
FMBS UY1 YAOUNDE 24 JUNE 2004 DEFINITIONS
• CANCER REGISTRATION :
The process of continuing systematic
collection of data on the occurrence,
characteristics, and outcome of reportable
neoplasms with the purpose of helping to
assess and control the impact of malignant
disease in the community. • CANCER REGISTRY
The office or institution which is
responsible for the collection storage,
analysis and interpretation of data on
persons with cancer. PURPOSES AND USES OF
CANCER REGISTRATION
1- Epidemiological research
– Descriptive Epidemiology
Describes patterns of disease
– Analytic Epidemiology
Study of the causes of disease
2 - Health care planning and monitoring
–
–
–
–
Patient care
Survival
Screening
Prevention TYPES OF CANCER
REGISTRIES
- DEPARTMENTAL (PATHOLOGY, RADIOLOGY, ENT,
Ob/G, ONCOLOGY, ETC)
• HOSPITAL BASED CANCER REGISTRY
• Records all cases of cancer treated in a given hospital
• The population from which the cases come is not defined
• Collects information from one or more laboratories on
histologically diagnosed cancers
• The population from which the tumour tissue has come is not
defined
• The information has high diagnostic quality but is difficult to
generalize
• If the population is unknown only the PERCENTAGE
FREQUENCY can be calculated POPULATION CANCER REGISTRY
There are 2 sets of data collected:
• The tumour and the pop at risk
The tumour:
• Topography – the site or location of the tumour in
the body
• Morphology – the microscopic appearance of the
tumour (ICD-O-10)
• Behaviour – benign, in situ, malignant or
uncertain Population at risk:
• Must be defined (town, area, country)
• All non-residents to be excluded
• From Census data / estimates
• All cases in a defined population are registered
• True (unbiased) profile of cancer in the community
– incidence, stade distribution, survival, etc.
– calculation of incidence rates (because population at risk is
quantified) • Collects information on all new cases of cancer in a
defined population
• The population covered is usually that of a geographic
area
• the main interest is for epidemiology and public health WHY POPULATION BASED
REGISTRATION ?
• If the population from which the cases come
(« population at risk ») is known
• The incidence rate can be calculated (gives
a true picture of the difference in risk
between populations or groups) CASE-FINDING
• To find every new case of cancer diagnosed
in the geographical area covered by the
registry. METHODS OF DATA
COLLECTION:
• ACTIVE collection at source by registry staff
(visit, abstract, copy)
• PASSIVE notification by health-care workers
from copies of discharge forms ,abstracts, reports
etc
• MIXED
• AUTOMATED - use of data already stored in
other information systems « down the wire » REPORTABLE CASES
• Every new case of cancer from area covered
by the registry
• Diagnosed and /or treated on or after the
registry’s reference date
• On the reportable list SOURCES OF INFORMATION
•
•
•
•
•
Hospitals
Clinics
Laboratories
Vital statistics
Death certificates MAIN SOURCES OF DATA
•
•
•
•
Highly developed medical infrastructure
Cancer centres
Hospitals (medical records)
Death certificates. HOSPITAL DATA SOURCES
•
•
•
•
•
•
•
•
•
•
•
pathology laboratory
haematology unit
Radiology
ultrasound
nuclear medicine
computerized tomography
magnetic resonance imaging
medical records
hospital cancer registry
hospital departments (gynaecology, ent, paediatrics,)
Pathology, Radiotherapy , Oncology treat practically only
cancer cases and generally have good records PATHOLOGY DEPARTMENTS
•
•
•
•
•
•
•
CASES DIAGNOSED :
By biopsy
By cytology
(at autopsy)
Quality of information
Diagnostic data are very good
Identifying information often poor AUTOPSY
• Good source of information when available high
level of diagnostic accuracy
Note
• The proportion of :
– all deaths
– all cancer deaths autopsied in a country / region
may influence incidence
• Cancers discovered incidentally at autopsy should
be marked to assess impact. SCREENING PROGRAMMES
• cervix
• breast
• prostate
• large bowel
• occupational groups at risk
Note
• take care to differentiate pre-invasive from invasive
diagnoses
• screening of asymptomatic people = possible detection of
cancers which may never become apparent clinically. PRIVATE CLINICS AND HOSPITALS
• important to obtain cooperation but often,
difficult (confidentiality)
• useful when clinicians are also on staff of
local hospitals
• problem of diagnosed patients who go
abroad for treatment. CANCER REGISTRATION:
Special problems in some countries
• Lack of basic health services
• Lack of stability of population
• Identity of individuals
• Lack of trained personnel
• Lack of follow-up
• Non-availability of census data
• Non-availability or poor quality of death
certificates BASIC INFORMATION :
• compulsory and optional variables
THE PERSON
• Name (according to local usage)
• Sex
• Date of birth or age (estimate if not known)
• Address (usual residence)
• Ethnic group (where appropriate)
• Profession
• Marital status •
•
•
•
•
•
•
•
Address (place of usual residence)
Place of birth
Marital status
Nationality
Religion
*Occupation & industry
Year of immigration
Country of birth of father/mother THE TUMOUR
•
•
•
•
•
•
•
•
•
•
Incidence date
Most valid basis of diagnosis
Method of detection
Site of primary*
Histology
Behaviour
Extent of disease/stage
Site(s) of metastases
Multiple primaries
Laterality BEHAVIOUR
•
•
•
•
•
Benign
Uncertain
Insitu
Malignant
Metastatic STAGING
• The extent of disease defined in terms of an
established set of rules
• CLINICAL STAGING
• - TNM
• TNM (pTNM, cTNM, PTNM, rTNM)
• STAGE:May be up to 40 combinations of
– T (0-4)
– N (0-3)
– M (0-1)
• They are condensed into stage groups 0-1V • AJCC
• Site-specific staging
• (Dukes, FIGO…) schemes
•
•
•
•
•
PURPOSES
CLINICAL :
Planning treatment
Providing prognosis
Evaluate results of treatment EPIDEMIOLOGY/PUBLIC HEALTH:
• Evaluate cancer screening/early detection
• Evaluate outcome of cancer control
EXTENT OF DISEASE CODING
• The extent of involvement of the tumour as
determined using all diagnostic &
therapeutic evidence available at the end of
the first course of therapy, or within four
months of the date of diagnosis, whichever
is earlier • EXTENT OF DISEASE CODES
– End results groups :
– In situ
– Localized
– Regional
– Distant
• Disease outcome: Dead or Alive MORTALITY RATES AS A MEASURE OF
CANCER OCCURRENCE
• 1. Poor survival (lung, oesophagus, stomach, liver)
M=I
• 2. Fair survival (breast, cervix, colon) M
Cancer Registration: Principles And Methods
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