Freddie Bray International Agency on Research on Cancer

IARC, Cancer Registries & Regional Hubs for Cancer Registration in LMIC

Freddie Bray International Agency on Research on Cancer

Sleman 02 May 2013

IARC: an international effort to combat

cancer

The International Agency for Research on Cancer (IARC), the specialized cancer Agency of WHO was established in May 1965 following an initiative by French leading scientists supported by General de Gaulle, who proposed the idea that advanced nations could unite to curb a growing global health threat: cancer.

IARC’s 22 Participating States

United States 1965

Australia 1965

Japan 1972

Belgium 1970

Spain 2003

France 1965

Italy 1965

Germany 1965

United Kingdom 1965

Denmark 1990

Norway 1987

Sweden 1979

Switzerland 1990

Netherlands 1967

Canada 1982

Finland 1986

Russian Federation 1965

Ireland 2007

India 2006

Rep. of Korea 2006

Austria 2008

IARC Governance

Governing CouncilScientific Council

Turkey 2011

Key Principles Priority areas

1. Describing the global cancer burden

2. IARC Monographs3. Cancer aetiology4. Mechanisms of

carcinogenesis5. Cancer prevention6. Education & training

1. Primary role is research

2. Promote collaboration

3. Interdisciplinary research

4. Worldwide mandate

5. Education & Training

IARC Organizational Structure

Courses in cancer registration: 2010-13• Annual IARC Summer School Module 2010-2013 (Lyon)• Ecuador (April 2010)• Trinidad and Tobago (April 2010)• Cape Town (Sept 2010)• Mumbai (March 2011)• Cairo (Nov 2011) in French• Mumbai (March 2012)• Cali (Oct 2012) in Spanish• Abuja (Nov 2012)• Bangkok (March 2013)• Jakarta (May 2013)• Izmir (July 2013)• Chennai (Sept 2013)

Global Indicators- Collection - Analysis - Dissemination

• Routine / ad hoc publications

Registry SupportRegistry Collaboration

Descriptive Epidemiologic Research • ‘Cutting-edge’

Representation of Surveillance activities Section of Cancer Information

• Dissemination of Global Indicators incidence mortality survival prevalence DALYs

• Descriptive epidemiological research comprehensive collaborative methods-driven cutting-edge

• Close cooperation & support for cancer registries in LMIC - IARC Regional Hubs for Cancer Registration technical support training research advocacy networking

Section of Cancer Information:Global Surveillance

2012

Lancet Oncology 2012;13(8):790-801.

Lancet 2012;380(9856):1840-50.

Int J Cancer. 20;132(5):1133-45

*assuming no change in risk from 2008

5.6m cancer cases 2008

21.3m cancer cases 2030

80% increase by 2030

7.1m cancer cases 2008

35% increase by 2030

More developed Less developed

The global burden of cancer

• 12.7m new cases in 2008, 56% in less developed regions• 21.3m estimated for 2030*, 60% in less developed regions

Ranking of age-standardised rates of mortality for cancer vs. cardiovascular disease + diabetes (combined) & chronic respiratory disease. Ages 30-70, both sexes.

Source: WHO Global Health Observatory Data Repository

0

A world in transition: (i) trends in HDI 1970-2011 in selected countries ; (ii) traditional view of developed vs. developing; (iii) four levels of HDI circa 2007;.

circa 1970

circa 2011

NorwaySweden

QatarUruguayRussiaColombiaChina

Morocco

Uganda

Kenya

Congo (Dem Rep)

2011

HDI trends 1970-2011 (Source: UNDP 2010)

1970

(ii)

(i)

(iii)

Burden• Of 57 million deaths in 2008,

2/3 due to NCDs.• Cancer will be an increasingly

important cause of morbidity/mortality in next few decades in all regions.

Population-Based Cancer Registries

• Current capacities for NCD surveillance are inadequate in many countries and urgently require strengthening.

• Cancer morbidity is essential for planning & monitoring cancer control initiatives.

• PBCR are core components of national programmes - provide means to plan, monitor and evaluate the impact of specific interventions in targeted populations.

Global Indicators- Collection - Analysis - Dissemination

• Routine / ad hoc publications

Registry SupportRegistry Collaboration

Descriptive Epidemiologic Research • ‘Cutting-edge’

Support to Registries – IARC Regional Hubs for Cancer

Registration technical support training research advocacy networking

Process of Cancer Registry in Indonesia

2006 : Hospital-based Cancer Registry in Jakarta as a Model (40 hospitals) Population-based Cancer Registry

1987 : Pathological-based Cancer Registry in 13 Centers Diagnostic of Pathology

1970 : Population-based Cancer Registry in Semarang, Central Java

2010 : Population-based Cancer Registry 2005-2007 in 594 Health Care Facilities (152 Hospitals, 2 Clinics, 345 Primary Health Care, 7 Private Path Lab, 88 Clinical Lab)

2011 : Data submit to CI5 Volume X and IICC-3

2012 : PBCR in Jakarta 2008-2012

2012-2014 : Expanding to Urban-Rural Areas

• Recommendations for a set of voluntary global targets for the prevention and control of NCDs.– 25% reduction in premature NCD mortality

• A comprehensive global monitoring framework to monitor trends and assess progress made in the implementation of national strategies & plans on NCDs– Cancer Incidence (collected by population-based

cancer registries)

Action Plan for the Global Strategy for the Prevention and Control of NCDs 2013-20

National mortality series: availability

1.1(5/5)

5.5(11/7)

80.5(11/2)

4.0(44/15)

83.0(54/2)

32.5(100/29)

11.6 total(225/60)

Cancer Incidence in Five Continents% population covered by cancer registries in Vol. IX

1998-2002(number of registries/number of countries providing

data)

Inclusion of sub-Saharan African cancer registries in CI5 I-IX

Country Registry CI5 volumes

1 2 3 4 5 6 7 8 9

Mali Bamako x x x

Mozambique Lourenço Marques x

Nigeria Ibadan x x x

Senegal Dakar x

South Africa Jo’burg Bantu x

Natal African x

Natal Indian x

The Gambia x x

Uganda Kampala x x x x

Zimbabwe Harare African x x x

Harare European x

What is cancer registration?• Cancer Registry

• The office or institution which is responsible for the collection storage, analysis and interpretation of data on persons with cancer

• 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.

• Population-Based Cancer Registries (PBCRs)• Collect 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

Key areas High Income Low/Middle Income

Data Collection Passive Active + Passive

Health information system

Computerised Paper-based

Access to health services

Excellent Moderate to Poor

Case confirmation High Microscopic Verification

Moderate

Record Linkage Possible Difficult

Follow up Good Poor

Death registration/certification

Excellent Poor

Cancer Registries – characteristics by development

• Clear definition of the catchment population• Size of population and number of cases

–Decide on optimal size of the population covered by the registry

• Physical location of the registry• Legal aspects and confidentiality• Advisory committee

–Seek cooperation / support of medical community.–Representatives of funder(s), sources and users of data

• Personnel–Leadership of PBCR Director–Necessity of adequate staffing, expertise and training

• Equipment (IT - linkage of sources) / office space• Financing

–Dependant on size of area, data items collected, different sources etc.

Planning for a PBCR

The Global Initiative for Cancer Registry Development

• To develop capacity in LMICs to produce reliable, high-quality information on the burden of cancer – a key response to the UN Political Declaration on NCD in Sept 2011.

• It proposed the establishment of a global network of regional hubs to provide support, training and infrastructure to local networks of cancer registries

• GICR is an IARC initiative, backed by a number of major international partners

• Fundraising program being developed with UICC with a minimum target $5m over 5 years

http://gicr.iarc.fr/

• First IARC Regional hub for the Asia region established at the Tata Memorial Centre in Mumbai (India) in 2011. Inaugurated October 2012.

• Second hub being launched in 2013 in Izmir (Turkey) [with support from Centre for Global Health, NCI, USA and the Cancer Control Department, Ministry of Health of Turkey]

• African Cancer Registry Network (AFCRN) launched in 2012 [collaboration led by Dr Max Parkin, INCTR with support from ACS, USA]

• Next steps: • Establishment of Hub in Latin-

America and Caribbean with local partners (RINC)

• Hub Executive Group

The Global Initiative for Cancer Registry Development

http://gicr.iarc.fr/

Technical support Training Research Advocacy & Networking

Availability of Cancer Registries Worldwide – last 10 years

CI5 inclusion

PBCR

HBCR orPaBCR

CR not yetestablished

B. Potential to become population-

based

C. Potential to be of CI5 standard

D. CI5 Registry

Enhancing Cancer Registration via Hubs:

the regional perspective PaBCR=Pathology-Based Registry

A. No data

Current level attained

CI5 inclusion

PBCR

HBCR orPaBCR

CR not yetestablished

A. No data

B. Potential to become population-

based

C. Potential to be of CI5 standard

D. CI5 Registry

Enhanced level via Hub support

Enhancing Cancer Registration via Hubs:

the regional perspective PaBCR=Pathology-Based Registry

Current level attained

Data availability – cancer incidence

Support for Registration

Training Support

Research Networking

• Hub as 1st point of call– Initial response to all

queries.• Support and advice re:

– CanReg5– registration methods,

coding and classification– data quality, statistical

analyses and presentation

• Ad hoc consultancy, advice and advocacy, direct support– including site visits– Support identification

and delivery of collaborative agreements with registries.

Research

Training

AdvocacyNetworking

Direct Support

CanReg5 Installation & Assistance

Collaborative Agreements:

• Indonesia (2012)

• Mongolia (2012)

• Sri Lanka (2012)

Site visits:• Nepal (2012)• Bhutan (2013)• Thailand (2013)

Indonesia (2013)• Cambodia

(2013) • Vietnam (2013)• Bangladesh

(2013)

Courses:• Mumbai (2012)• Bangkok (Mar

2013)• Jakarta (May

2013)• Chennai (Sept

2013)Data Quality / Costing:• India / ThailandFirst Registry Reports:• Indonesia• Mongolia• Sri LankaCancer in Asia 2003-7

Activities

2012-13

• China• India• Japan• South Korea• Singapore • Thailand• Philippines• Vietnam• Pakistan• Malaysia

Population Based Cancer Registries - S&E Asia

• Indonesia• Mongolia• Sri Lanka• Banglades

h• Bhutan• Cambodia• Nepal• Myanmar• Laos

Established Potential

• HBCR since 1980• Part of NCCP

• PBCR in Colombo(2.6 million)

• More staff (registrars)

• CanReg5• Quality evaluation• Analysis / use of

data

Population Based Cancer Registries - Progress

• HBCR since 1960• Part of NCCP

• National PBCR(2.5 million)

• Staff for active finding

• Commitment to PBCR

• CanReg5• Quality evaluation• Analysis / use of

data• Training

• HBCR since 2003• No NCCP

• PBCR in Kathmandu Valley(<2 million)

• HBCR to function• Commitment to

PBCR

NepalSri Lanka Mongolia

His

tory

Aim

Need

s

• 50%-80% of the population of developing countries reside in rural areas.

• A realistic estimate of the cancer burden is therefore possible only if rural cancer incidence is documented.

Geography Rural Urban Total

Indonesia 110,965 (46%)

128,634 (54%)

239,600 (100%)

Sri Lanka 16,614 (85%)

2962 (15%)

19,576 (100%)

Nepal 24,451 (82%)

5,447 (18%)

29,898 (100%)

Thailand 43,007 (66%)

22,118 (34%)

65,125 (100%)

China744,282 (55%)

607,230 (45%)

13,515,12(100%)

Population (in thousands) : 2010

Source : http://esa.un.org/unup/p2k0data.asp

Urban and Rural Populations

Cancer incidence in urban and rural India

Site of Cancer South Rural South Urban West Rural West Urban

  Dindugil Chennai Barshi Mumbai

  2003-06 2003-05 2004-05 2005

Cervix 22.1 22.0 22.8 12.9

Breast 10.9 32.2 9.4 30.3

Ovary 3.3 5.6 3.8 6.9

Mouth 2.8 4.9 0.4 3.6

Stomach 2.5 5.3 0.5 2.4

Esophagus 1.8 4.6 4.0 3.6

Large bowel 1.4 4.4 1.6 5.0

Leukaemia 1.5 3.7 1.3 3.1

Thyroid 1.1 3.0 <0.1 1.3

Brain 1.0 2.1 1.1 2.4

All Sites 62.6 118 59.9 102.3

• Jakarta Cancer Registry (urban population-based)

• Sleman Cancer Registry (rural population-based)

Challenges and opportunities for future cancer registration

• Prioritize government resources to cancer registration as an integral part of cancer control

• Increase coverage and quality in areas of the world currently underrepresented