1. Bulletin of the World Health Organization,
Sept. 2011;89:640–647
Impact Factor 5.3
Centre for Community MedicineCentre for Community Medicine
All India Institute of Medical Sciences, New DelhiAll India Institute of Medical Sciences, New Delhi
Cancer Registration and its Challenges in India
25/07/2014
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Presenter
Dr. Priyamadhaba
Behera
Preceptor
Dr Archana

2. References
• http://www.ncrpindia.org
• http://www.hbcrindia.org
• http://www.pbcrindia.org
• http://www.canceratlasindia.org
• NCRP-Three-Year Report of Population Based Cancer
Registries 2009-2011
• NCRP-Consolidated Report of Hospital Based Cancer
Registries 2007-2011
• Time Trends in Cancer Incidence Rates 1982-2010
• Jensen O. M. et al. (eds). Cancer Registration, Principles and
Methods No. 95 (IARC, Lyon, 1991)
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3. Outlines of presentation
• Introduction
• National Cancer Registry Programme
• Population Based Cancer Registry
• Hospital Based Cancer Registry
• Atlas of Cancer in India
• Critical appraisal
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4. Introduction
• Systemic collection of data on the occurrence
and characteristic of neoplasm (Mclennan et
al 1978)
• Cancer registration is central to national
cancer control programme (Muir, C.S. 1985)
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5. Introduction
• Worldwide-14.1 million new cases and 8.2 million
cancer-related deaths in 20121
• By 2030 new cancer cases will increase to 21.7
million, and the cancer-related deaths to 13 million
globally
• 13 million of the new cancer cases and 9 million of
the deaths will occur in less developed regions
• 2.5 million cancer cases and 0.7 million new
cases/year in India2
1.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT
2. http://nihfw.nic.in/ndc-nihfw/html/Programmes/NationalCancerControlProgramme.htm 5/ 38

6. 6/ 38
Epidemiologic principles lay the foundations for evidence
based scientific cancer research, determining risk factors,

7. Introduction Continued
• Extraordinary resources of information for
clinicians, researchers, scientists, policy makers,
and the public in our fight against cancer1
• Identifying High-Risk Groups
• Increasing Screening in Underserved Areas
• Investigating Possible Cancer Causes
• Evaluating patterns of clinical care
Das A et al “Cancer registry databases: an overview of techniques of statistical analysis
and impact on cancer epidemiology.Methods”. Mol Biol. 2009;471:31-49. 7/ 38

8. 8/ 38.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT

9. History of cancer registration in
India
• Until 1964- information on cancer occurrence
in India was available from surveys
• Initiation of population based cancer registries
 Bombay in 1964
 Pune in 1973
 Aurangabad in 1978
 Ahmedabad & Nagpur in 1980
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10. National Cancer Registry Programme
• Commenced by ICMR with a network of cancer
registries across the country in December 19812
• Started with three PBCR -Bangalore, Chennai and
Mumbai and three HBCR -Chandigarh, Dibrugarh and
Thiruvananthapuram
• Now there are 28 PBCR and 7 HBCR sites in India
2.http://www.ncrpindia.org
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11. National Cancer Registry Programme
Continued
Objectives of this programme
• To generate reliable data on the magnitude and
patterns of cancer
• Undertake epidemiological studies based on results
of registry data
• Help in designing, planning, monitoring and
evaluation of cancer control activities under the
National Cancer Control Programme (NCCP)
• Develop training programmes in cancer registration
and epidemiology
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12. 12/ 38

13. National Cancer Registry Programme
Continued
• Steering Committee and a Monitoring Committee-
meets periodically to oversee and guide –functioning
• A review meeting is held annually -Principal
Investigators and staff of the registries present results
and participate in the discussions-preceded by a
workshop
• Cancer registration in India is active
• Death certificates are also scrutinized from the
municipal corporation units
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14. National Cancer Registry Programme
Continued
• Information collected on a core form -subsequently
entered into a computer
• Use modern advances in electronic information
technology (enter the checking of the data, verification of
duplicates and matching mortality and incidence records)
• Electronic processing of data -tried out in some registries
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15. Population Based Cancer Registries
• Basic thrust of a PBCR is cancer in community
• PBCR provides - data on incidence and mortality (also
variation in incidence and mortality)
• Three new centers Patiala, Naharalagun,Pasighat has
started
• Good PBCR requires
 Meticulous planning
 Cooperation from medical institutes
 Dedicated personal and adequate funding
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16. Population Based Cancer Registries Continued
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17. Population Based Cancer Registries
Continued
• Data collection-
Facilities
Clinician and pathologist
Death certificate
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18. Population Based Cancer Registries Continued
Essential variables1
• Personal identification (names (in full) and/or unique
• Sex
• Date of birth or age
• Address (usual residence)
• Ethnic group (when the population consists of two or more
groups)
• Most valid basis of diagnosis (enables cases to be registered
with a non-histological diagnosis)
• Topography (site) of primary cancer
• Tumour morphology (histology)
• Tumour behaviour (benign, uncertain, in situ or malignant)
• Source of information
1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991).
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19. Population Based Cancer
Registries Continued
Recommended variables1
• Date of last contact
• Status at last contact (at least dead or alive)
• Stage or extent of disease at diagnosis
• Initial treatment
1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991).
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20. Flow chart showing working of Delhi cancer registry
Sources
Radiotherapy Deptt. Pathology Deptt.Medical Record Deptt. Vital/Stat. NDMC/MCD
Resident
Name, Age, Sex,
Treat.
Topo,Morph. &
Add.
NR NR NRName, Age Sex,
Topogrphy, Morphology
(App. 40,000)
Arranged Alpha. Arranged Alpha.Arranged Alpha. Arranged Dictio.
Matching
Coding
Data Entry
Resident
Name, Age, Sex, Treatment
ICD.9 or ICD.10 & Add.
Resident
Name, Age, Sex,
casuse of death & Add.
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21. Data Entry
Sorting of data by Sex,
Name, Address & disease
wise
Removing of duplicates
within the current year &
previous years
Estimation & standardization
of population with world
population
Generating tables, calculating of
CR, ASR, AAR, for Morb. & Mort.
Data
Report Writing
Flow chart showing working of Delhi cancer registry
(Cont….)
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22. Hospital Based Cancer Registries
• The primary purpose -to contribute to patient care by
providing readily accessible information on the patients
• Data - used for clinical research and for epidemiological
purposes
• Within the hospital, a registry - integral part of the
hospital’s cancer programme or health care delivery
system
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23. Hospital Based Cancer Registries Continued
Objectives (Maclennan et al, 1978; Young, J.L. 1991)
GENERAL:
-Assess Patient Care
-Participate in Clinical Research to Evaluate Therapy
-Provide an idea of the patterns of cancer in the area
-Help plan hospital facilities
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24. Hospital Based Cancer Registries
Continued
• Data collection is done by the individual registries
using a standardized common core form
• The information of patient
 Identifying and demographic information
 Details of diagnosis the clinical stage of the disease
 Broad type of treatment instituted
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25. 25/ 38

26. Development of an Atlas of
Cancer in India
• A major advance for using Information
Technology in Medicine
• Web-based design and approach with on-line
transmission
• Unlike the working of PBCRs, no systematic
attempt was made to actively visit every
diagnostic and treatment centre
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27. Development of an Atlas of
Cancer in India
•
Strengthening of departments of pathology
Providing orientation/ training in cancer registration
• Cost-effective
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28. Data entry screen from Cancer Atlas website
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29. Critical appraisal-1
• Coverage of population based cancer registry
(only 7.5%) in India is low1
• Cancer Registries covering 21% of the world
population2
• Less in rural (2 wholly rural) and tribal (0) area
1.NCRP-Three-Year Report of Population Based Cancer Registries 2009-2011
2.Parkin DM.The evolution of the population-based cancer registry.Nat Rev Cancer.2006 Aug;6(8):603-12
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30. Critical appraisal -2
• Quality check. Few indicators of quality check
are still far from good quality data
Age unknown
Unknown duration of stay
Microscopic verification
Clinical extent of disease before treatment
Unspecified site/subsite
Unspecified histology
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31. Critical appraisal -3
• Linkage of various data (patient level, local
level and national level) needs to be improved
e.g English National Cancer Online Registration
Environment (EnCORE)
• Real time data entry
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32. English National Cancer Online
Registration Environment (EnCORE)
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33. English National Cancer Online Registration
Environment (EnCORE)
Are patients following local treatment guidelines? 33/ 38

34. Critical appraisal -4
• Shortage of manpower
• Interviewing the patient becoming difficult
due to time convience
• Lacking of ICD proper coding in many hospitals
• Laborious and time-consuming process for
going through all records and death
certificate
• New Private hospitals providing soft copy but
not hard copy of patient
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35. Critical appraisal -5
• Numerator in PBCR, is questionable
Under-reporting is common
Facilities/Clinician and pathologist
 Depends upon the health care seeking
behaviour
Death certificate
Quality and maintenance of death certificate
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36. Critical appraisal -6
Method Cost/case registration
(in Rupees)
PBCRs of the ICMR in Urban
area
350
PBCRs of the ICMR in Rural
area
4500
Cancer Atlas Project 24
Cost-effectiveness
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37. Critical appraisal -7
• Co-ordination with District Cancer Control
Programme may be vital
PHC,CHC,
Regional cancer centre (19)
Wings of cancer control (241)-helps to bridge geographical
barrier
District hospital CHC PHC
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38. Critical appraisal -8
Reach at primary level
Do we really need a cancer registry to reach
primary level?
Histopathology and staging of cancer-tertiary
care hospital
• Role of ASHA, ANM, information assistant
• Data quality, duplication of data, increasing
work burden will be a issue 38/ 38

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THANK YOU
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51. Standard
Complete
ness of
Case
Ascer-
tainment
Records
Passing
Edits*
Death
Certificate
Only
Records
Missing
Age
Records
Missing
Sex
Records
Missing
Race
Months
After End
of
Diagnosis
Year
National
Data Quality
Standard
≥95% ≥99% ≤3.0% ≤2.0% ≤2.0% ≤3.0% 23–24
Advanced
National
Data Quality
Standard
≥90% ≥97%
Not
applicable
≤3.0% ≤3.0% ≤5.0% 12–13
USCS
Publication
Standard
≥90% ≥97% ≤5.0% ≤3.0% ≤3.0% ≤5.0% 23–24
Comparison of NPCR Program Standards (USA)
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57. Evolution of NCCP
1975-76 National Cancer Control Programme was launched with priorities given for
equipping the premier cancer hospital/institutions. Central assistance at the
rate of Rs.2.50 lakhs was given to each institution for purchase of cobalt
machines.
1984-85 The strategy was revised and stress was laid on primary prevention
and early detection of cancer cases.
1990-91 District Cancer Control Programme was started in selected districts (near
the medical college hospitals).
2000-01 Modified District Cancer Control programme initiated.
2004 Evaluation of NCCP was done by National Institute of Health & Family
Welfare, New Delhi.
2005 The programme was further revised after evaluation.
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