the origin of indian cancer registry and the national cancer registry program

1. Cancer registry and
epidemiology
Dr Purvi Rathod

2. Introduction
• It is a information system designed for collection , storage and
management of data collected on cancer patients.
• The GLOCOCAN 2018 data suggests that the global cancer
burden has risen to 18.1 million cases and 9.6 million cancer
deaths.
• Asia accounts for nearly half of the new cancer cases (48.4%) and
more than half of cancer deaths.

5. Indian cancer society
• It was established in 1951 by Dr. D. J. Jussawalla and Mr. Naval
Tata in Mumbai.
• In an era when infections and communicable disease were
rampant in India.

6. Milestones of ICS

8. First Indian Cancer Congress in 1961

9. Setting up a cancer registry in india.
• A limited period cancer survey was undertaken in the Manipuri
district of Uttar Pradesh by the Indian Cancer Society, Mumbai.
Following the survey, the Indian Cancer Society established a
population-based cancer registry in Mumbai in the year 1963.
• With the idea of getting a picture of cancer pattern in whole of
Maharashtra, three satellite registries of the Mumbai registry
were established; at Pune in 1972 , at Aurangabad in 1978 and at
Nagpur in 1980
• Similarly the Gujarat Cancer Research Institute established the
Ahmedabad registry in 1980.

10. National cancer registry programme
• Apart from those 4 cancer registries there was no data of national
level available about cancer until 1980.
• Realising the growing problem of cancer due to the control of
communicable diseases and the resultant increase in life expectancy
NCRP was launched in 1982.
• launched by ICMR ( Indian Council Of Medical Research) to provide the
data regarding cancer incidence and prevelance with a network of
cancer registries around India.

11. National cancer registry programme (ICMR)
• The objectives of the programme.
a) Generating authentic data on the magnitude and pattern of cancer
problem.
b) Undertaking epidemiological investigations and institute control
measures.
c) Promoting human resource development in cancer registration and
epidemiology.
d) Provide research base for developing appropriate strategies to aid in
NCRP; in the form of planning, monitoring and evaluation of activities
under this programme.

12. Types of registries
• Population based cancer registry. (Collection of data on all
patients residing in a particularly defined geographical area )
• Hospital based cancer registry. (Maintains data on all patients
diagnosed and/or treated for cancer at a particular hospital.)

13. Population based cancer registries
• To obtain reliable data on cancer morbidity and mortality from a
precisely defined urban population.
• Sources - Government Hospitals, Private Hospitals, Nursing
Homes, Clinics, Diagnostic Labs, Imaging centers, Hospices and
Registrars of Births & Deaths.
• The coverage is about 10% of the population of India.

14. Need for PBCR
• Majority of cancers are environmental in origin.
• The PBCR looks for patterns and clusters within the community
to look for causes of cancers.

15. Screening models
• Opportunistic screening- when the individual asks the health care
personel for a screening test.This model was successful in
America but the rural population of india is illiterate and is not
aware about the screening facilities.
• Organised population based screening- the health care personel
offers the screening test when visited by the patient.This model
is approved byWHO in developing countries.

17. Use of registry data
• The registry looks for trends in incidence, cluster pockets and
patterns in the community.
• To identify correctable causes and prevent cancer.
• It looks for trends in mortality and survival patterns.
• To assess effectiveness of treatments.

18. Quality analysis in PBCR
• Complete coverage- to obtain data of all cancers diagnosed in
the population.
• Adequacy of data- obtain certain core and critical information
about all patients.
• Accuracy of data- data is free from erroneous abstracts and
entry.
• Comparability of data- to adapt a coding or classification
technique to compare different patients data.

19. Limitations of PBCR
• The same patient if registered in 2 different hospitals can get
registered twice in the registry.
• the developing countries do not have an advanced health
information system (HIS) and unique identification number (UID)
that identifies each and every individual of the country by a
unique number ( India has Aadhar number ).
• The data collection method is active hence we have to depend on
the sources to register data.

24. Performa
1.Name of the Participating Center
2.Registration Number
3.Hospital Registration Number
4.Date of Diagnosis
5.Full Name of the Patient
6.Age
7.Name of the father
8.Name of the husband/wife
9.Place of Permanent Residence
10.Relationship of Respondent
11.Method of Diagnosis
12.Type of Microscopic slide
13.Anatomical site
14.Complete pathological diagnosis
15.Coding Acc.To ICD-O3

25. Duplicate entry check
Matching 1. Within the Hospital
2. Between the Hospitals
3. With Previous years incidence cases
Methodology 1. Manual - Within Sex (By Surname & first name)
2. Electronically –Within Sex (By Surname & first name)
MatchingVariable –
1. Sex
2. Name
3. Age
4. Site
5. Religion
If site is different ----- check for Multiple Cancer ????

26. Hospital based cancer registries
• They are associated with recording of information on the cancer
patients seen in a particular hospital.
• Within the hospital, a registry is often considered to be an
integral part of the hospital’s cancer programme or health care
delivery system.
• they contribute to patient care by providing readily accessible
information on cancer patients, the treatment received and its
results.
• The data is also used for clinical research and for epidemiological
purposes.

27. Objectives of HBCR
1 Assess Patient Care
2 Participate in Clinical Research to EvaluateTherapy
3 Provide an idea of the patterns of cancer in the area
4 Help plan better hospital facilities.
5 Contribute to the Population Based Cancer Registries (PBCRs) in
the given area.

30. Summary
• Currently, there are 29 PBCRs and 17 HBCRs and NCRP is now a
part of National Centre for Disease Informatics and Research
(NCDIR).
• Overall health information system is inadequate not only in India
but in the developing countries in general.There has been a lot of
development on this front in our country over the last 3 decades.

31. Thank you