POPULATION-BASED CANCER

REGISTRY, I.R OF IRAN Tehran

Workshop
KAZEM ZENDEHDEL, MD, PHD 29 April,
2015
ETHNIC GROUPS IN I.R OF IRAN

1. Persian 51%
2. Azeri (Turks) 24%
3. Gilaki and Mazandarani 8%
4. Kurd 7%
5. Arab 3%
6. Lur 2%
7. Baloch 2%
8. Turkmen 2%
9. other 1%

The reason for insisting for national coverage

CANCER INCIDENCE AND MORTALITY IN
I.R OF IRAN
SOURCE: GLOBOCAN 2012
 HISTORY OF CANCER REGISTRY IN I.R.
OF IRAN

National Program (Pathology based Cancer Registry)

• 1994: law for the compulsory reporting of cancer cases
• 1996: a program was established for the cancer registration of cancer from
pathology departments in Iran (18,435)
• 1999: second report with about 11,000 cancer cases
• 2000: Extension to provincial level: 18000 cases
• Annual reports in 2003-2009.
• 2007: 62,000 cases (86% coverage) , assuming that 100/100,000 is the real estimate
• 2007: population based cancer registry in 5 province
• 2009: population based cancer registry in 20 province

• Other Programs (By Research Centers):

• Golestan, Tehran, Tabriz, Kerman, Semnan, Shiraz, Ardabil provinces
• 2013: Golestan Province report was published in CI5

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 NATIONAL CANCER REGISTRY OF I.R.
OF IRAN

5/5/2015 8
 PUBLICATION

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 NATIONAL CANCER REGISTRY OF I.R.
OF IRAN

Figur: Incidence rate of all cancer in Iranian women in 1388 (2009-2010) Figur: Incidence rate of breast cancer in Iranian women in 1388 (2009-2010)

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DR MAX PARKIN (2003)

1. Registration should be locally based and ministry of

health should coordinate the regional registries,
promote uniform standards, set a policy for support the
new registries and to compile the data from the
regional registries to make a national estimates at
annual intervals.
2. The national pathology registration project must be
extended by additional data from other sources given
the modest status of hospital information systems.
3. A more realistic target is to complete the pathology
based registration by ensuring that all laboratories are
comprehensive and accurate especially in record of
place of residence and eliminating duplicate data.
DR MAX PARKIN (2003)

1. Sentinel based – cancer registries have equivalent data and

valid incidence and can help to complete national
pathology based cancer registry data.
2. To improve recording of demographic information, which is
an important source of information for regional/ provincial
population based registry, the computer databases must be
generated to a common standard database.
3. An acceptable database structure, definition and codes, will
improve the Population Based Cancer registries. A definitive
version of CanReg 4 using Farsi script with the issue of record
linkage of name records with 2 day course for DDRC/Cancer
Institute staff in Lyon or Teheran or by IARC staff must be
organized.
4. Evaluation of cancer registry system must be done in One
year/ 18 month. [21]
DR KUMARS NASERI (2011)

• Creation of a supervisory committee composed of high

level technical and administrative individuals to identify
the general directions of the cancer registry, its scope,
methods, and utility.
• Concentration of cancer registration activities under
separate directorate and independent of other cancer
control activities. This action should enable the director
of cancer registry to provide full time attention to the
practice and improvement of caner registration
activities.
• Provision of technical training for the staff and
administrators of the NICRS. This training should cover the
basic scientific principles of cancer registration,
management, data manipulation, and presentation.
DR KUMARS NASERI (2011)

• Creation of a special cadre for cancer data collection, “Certified

Cancer Registrar” for collection of cancer data from various
sources, including laboratories, physicians’ offices, and other
similar places. Creation of population based cancer registry
without this cadre will not be practical or easy. On page 152 of
the Guideline: National Cancer Registry (5), there is a sample
identification cadre for “Cancer Registry Personnel
(karshenassabtsaratan)” that seems to be more of administrative
purposes. It can be easily used for developing this particular
cadre through training and ongoing monitoring. This step is
crucial for the development of “population based” cancer
registry[22].
• Creation of the Hospital Cancer Registry. Although hospital
cancer registry is similar to general cancer registry, its objective is
improvement of patient care. As such, it is part of cancer patient
“management”. Hospital cancer registry can, however, provide
information about cancer patients seen at the hospital to the
general population base cancer registration system[22].
PACT/IAAE (2012)

• To pursue high quality cancer registration as a priority to

efficiently understand the situation of cancer in the country
with the aim of developing population-based cancer registry
or registries with high coverage levels. There is no need to
cover the entire country, but the population covered should
be representative and of good quality to allow accurate
estimates of cancer incidence in Iran, and enable efficient
health services planning.
• To develop hospital-based cancer registries in major hospitals
to ensure that information on stage of the disease, access to
treatment, treatment outcomes and cancer survival is
collected.
• To enhance the quality of the mortality information system, the
analysis of cancer mortality, as well as to link the information
with the cancer registry data. Accurate data on cancer
incidence and mortality are crucial for monitoring and
 EVALUATION OF PBCR IN I.R OF IRAN

Objectives
• To develop standard guideline and
questionnaire/checklists for evaluation of the PBCR

• To evaluate the design, process, and performance of

PBCR in Iran

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SOURCES
 • IARC technical report was also taken into
consideration

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 RESULTS

Figure: Results of Evaluation of Guideline, Organizational Structure,

Annual Report, and IT in Cancer Registration in I.R. of Iran in 2013

70
64.4

60 55.55
49.1
50 46
39
40 35.2
31 30 Completely fulfilled standards
29.6 30
30 Partialy fulfilled standards
24
21.8 21.3 lack of standards
20
13.8
9.25
10

0
Report Organizational Guideline IT Overall
Chart

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 RESULTS
Figur: use of different source of data for cancer registry in 20 universities that were suppoesed to perform
population based cancer registry. (Source: National Cancer Registry Report 2009).
20
20
18
18
16
14 13
No. of University

12
10
8
8
6
6 5
4 4 4
4
2 1 1
0

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 RESULTS
Figur : Coding practice and software use in pathology labs
0.9

0.8 0.78

0.7 0.67

0.6

0.5
yes
0.4 no
0.33

0.3
0.22
0.2

0.1

0
Using laboratory Software ICD Coding

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 RESULTS
Figur: Practice of Cancer Registry Staff for reporitng the duplicates and training of the cancer registry
staff at the laboratories and hospitals

0.7

0.62 0.62
0.6

0.5

0.4 0.38 0.38

yes

0.3 No

0.2

0.1

0
Removing duplicates Training of CR staff labaratories

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 RESULTS

Figure : Knowledge of Cancer registry staff about the process, importance and results of
cancer registry
60

51.9
50

40.7
40
Percent

30

20

10 7.4

0
weak moderate good
Score of the knoweledge

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 RESULTS

Table : Percentage of under-registration of the cancer specific mortality rate in

the Fars Province mortality registry, Iran, in 2006.

Cancer Type Underestimation rate (%)

All Cancer 42
Bladder Cancer 60
Colon Cancer 35
Esophageal Cancer 44
Lung Cancer 48
Stomach Cancer 30
Ovarian Cancer** 42
Breast Cancer** 27
Endometrial Cancer** 50
Prostate Cancer** 32

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 RESULTS
Table 7: Analyses of data from 5 provinces and estimation of death certificate cases only (DCO
%) for Iranian national cancer registry in 2009.
Variable Ahvaz Arak Mashhad Shiraz Isfahan Overall
-
Number of Data Sources
used in Registry 8 9 6 7 3

All number of cases in the 4834 2182 8900 5137 6515 27568
cancer registry

No. of Cases reported from

3921 (14.2%)
clinical sources 1408 (29%) 799(36.6%) 1483 (17%) 203 (4%) 28 (0.4%)

No. Of Cancer Death

3076 (11.1)
Reported N (%) 807 (20) 319 (23) 598 (10) 309 (7) 1043 (21)

No. Of Cancer Excluding

Non-melanoma Cancer 4097 1398 6048 4745 4987 16288

Death Only Cases in the

Cancer Registry Data, N (%) 729 (18) 189 (14) 385(6) 305 (6) 872 (18) 2480 (11.7)

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 NAIONALT PROGRAM FOR POPULATION
BASED CANCER REGISTRY

Tehran
Kerman
Fars
Isfahan
Kermanshah
East Azerbaijan
Markazi
Khouzestan
Mazandaran
Hormozegan
Golestan

There are proposals from other regions to join this

program.
 NATIONAL GUIDELINE FOR PBRC

• Chapter 1: Cancer, diagnosis, treatment

• Chapter 2: Introduction to cancer registry and it's objectives
• Chapter 3: Introduction to population based cancer registry program (PBCRP)
• Chapter 4: Components and model of PBCR in I.R. of Iran
• Chapter 5: Organization, workforce and job descriptions in reginal cancer registries
• Chapter 6: An overview of PBCR process in the new model
• Chapter 7: Process for case finding and data abstracting in regional cancer registry
centeres
• Chapter 8: ICD-O Coding
• Chapter 9: Data analysis
• Chapter 10: Preparation the report
• Chapter 11: Designing quality control program
• Chapter 12: Information technology in the PBCR
• Chapter 13: Confidentiality and security
• Chapter 14: regional PBCR offie equipments and Archiving
 MINIMUM DATA SET

• National ID
• Name and Family Name
• Age (Date of Birth)
• Sex
• Place of Birth
• Place of Residence
• ICD10 Categories (Neoplasia/ others)
• Date of Diagnosis
• ICDO3-C Code: Topography (tumor site)
• ICDO3-M Code: Morphology
 NATIONAL ADVISORY BOARD (12
MEMBERS)

1. Dr Reza Malekzadeh, Deputy of Research, MOHME, Director of National

Cancer Control Committee
2. Dr Kazem Zendehdel, MD, PhD, Director of Nationl PBCR Program
3. Dr Azin Nahvijou, MD, PhD, Manger of the PBCR
4. Dr Siamak Sameiei, PhD, Head of Reference laboratory, MOHME
5. Dr Ehsan Bitaraf, MD, Deputy of Statistics and Information Technology
Department, MOME
6. Dr Ardeshir Khosravi, MD, PhD, Director of National Causes of Death Registry,
MOHME
7. Dr Ali Ghnbari Motlagh, Rep of Deputy of Treatment, MOHME
8. Dr Gholamreza Roshandel, Director of Golestan PBCR
1. Aaa a new member in fututr
9. 2 Representatives from Pathology Association
10. Dr Abbas Sheikhtaheri, PhD, Consultant
11. Dr Alireza Sadjadi, MD, PhD, Consultant
 TECHNICAL TEAM

1. Kazem Zendehdel (Director)

2. Azin Nahvijou (Manager)
3. Ehsan Bitaraf (IT)
4. Maryam Jafarpour (IT)
5. Shahla Fozoonkhah (Medical Informatics)
6. Abbas Sheikhtaheri (Guideline consultant)
7. Mohammad Golmahi (IT)
8. Zahra Sedighi (QC)
9. Pathologist (Consultant)
ORGANIZATIONAL STRUCTURE
 Regional data sources
Cancer registry staff patologists

Electronic data

Submitting data to Documentation in HIS or LIS ICDO coding Pathology

paper regional office

Electronic data

Submitting data toData extraction or Entering data ICD10 coding Medical

paper
regional office abstracting into HIS Records
data in paper form
Electronic data

Submitting data to ICD10 coding Death

regional office registry

paper

National Other sources

middleware Submitting data to Data extraction Case finding
(radiotherapies,
for EHR system Web based regional office from HIS by a list of reportable chemotherapies,
National (other software) or cases or ICD10 codes etc.)

database filling paper form

Regional office of PBCR

Management, support, quality control Management, support, quality control

Regional advisory board

Receiving Import to CanReg ICDO coding Data Death Analysis Annual report Archiving
data or Registry Plus Quality checking, linkage clearance
IARC check, Remove
feedback duplicate

National office of PBCR

Province
Data
Management, support, quality control Management, support, quality control

National advisory board

Archiving Annual report Analysis Quality control, Importing national

Feedback, data to CanReg
Remove duplicate or Registry plus
‫فرایند های برنامه ملی ثبت سرطان جمعیتی‬
WWW.IRANCANREG.IR
 PROGRESS REPORT

• Designing the program

• Selection of the provinces
• Drafting the national Guideline
• Forms, checklist, templates, etc. for field visits
• Visit to Kerman, and Fars
• Pathology software model (LIS/HIS)
• Collaboration with National Mortality Registry
• Collaboration with National IT department, MOHME
• Technical Guideline for LIS/HIS soft wares
• Establishment of National Cancer Registry Committee
• IARC visit & Workshop
• Advocacy
• Website
• Consultation to the provinces
SEPAS COLLABORATION (PHASE 1)