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The Icelandic Cancer Registry

ICR

Laufey Tryggvadóttir

Managing director of the Icelandic Cancer RegistryClinical professor, Faculty of Medicine, University of Iceland

MY Pacjency - WE PATIENTS Foundation June 7th, Skógarhlíð 8

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Mission of the ICR

Top Quality Cancer RegistrationFirst Class Epidemiological Research

National University Hospital Department of Pathology

A private pathology laboratory

Akureyri Hospital

Pathologic data received by ICS

~ 91%

~ 7%

Hospital Discharge RegistryDirectorate of Health

Death CertificatesDirectorate of Health

Data from other registries

~ 2%

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Electronic data processing

USB keyData transferred to an ICR server

ICR serverA computer program processes data and

enters into ICR‘s database

ICR databaseInformation extracted for

incidence registration according to ENCR recommendations

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Quality control

Pathology reports read by registrars

checking for inconsistencies and

information that can not be extracted electronically

Contribution by human knowledge essential

Unresolved issues

reviewed by the Medical Director

International coding for morphology and

topography (SNOMED ->

ICD10, ICD-O3)

Built-in automatic checks plus annual IARC error checks

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Seeking explanations for discrepancies or looking for missing information, the registrars use online access to

the patient files of the National Hospital

When needed, the Medical Director requests additional information

Patient information

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Registration of prognostic factors

Prognostic factors registered routinely

since 2010 for selected sites

Prostate cancer since 1998

Swedish INCA system used as a model

Co-operation with INCA for registration and

output

Treatment information to be included later

The ICR receives, handles and stores sensitive data containing name and Personal Identification Number

Data handled according to Icelandic Data Protection Act which is based on EU's Data Protection Directive

Data protection

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Individual data

Individual data delivered for research

Dependent on permissions from National Bioethics Committee and Data Protection Authority

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Aggregate data

Data published 11 months after end of

each year

Coverage >99%

Tables and graphsIncidence, mortality and

survival

www.cancerregistry.is

- 2015- 2014- 2013- 2012- 2011- 2010

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ICR – registration and researchPrevention of cancer and benefitting cancer patients

 1. Registration of all cancer in Iceland2. Calculation/presentation of incidence, mortality and survival3. Handling of individual data4. Research – risk factors, natural history of cancer, prognosis....5. Dissemination of knowledge – homepage, scientific meetings, mass

media, health sector, governmental institutions, students, the public6. Contact with international registration and research – international

comparison; incidence, survival, diagnosis and treatment7. Evaluation of screening8. Icelandic Cancer Plan

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Databases

Icelandic Cancer Registry -1954Plus all breast cancer diagnosed in 1911-1953 (Gunnlaugur Snædal)

Cancer Detection Clinic Cohort90% of all Icelandic women in 1964-2008

Family Collection of the ICRFounded by Hrafn Tulinius 1972

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ICR• Established by the Icelandic Cancer Society in

1954

• Nationwide cancer registration

• Legislation on Directorate of Health and Public Health from 2007

99,15% þekjun

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Main fields of research

• Prognosis of cancer patients• Nordic studies -> PIN numbers, Nationwide Health

Registers• Etiology of breast cancer – genes/environment• Effects of BRCA2 mutations – risk, survival,

prognostic factors• International comparison

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International comparison1. Cancer Incidence in 5 continents (CIV) -> GLOBOCAN2. Association of Nordic Cancer Registries (ANCR)3. NORDCAN datbase – incidence, prevalence, mortality,

survival4. EUROCARE survival in Europe, HR studies5. CONCORD – survival worldwide6. ALICCS – population-based follow-up study of

childhood cancer patients7. INCA – co-ordinated registration of prognostic variables

and treatment of cancer

Nomesco, OECD, WHO

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EUROCARE-5 years of dx 2000-2007

Five year relative survival (%)

Stomach Colon BreastEurope 25,1 (24,8–25,4) 57,0 (56,8–57,3) 81,8 (81,6–82,0)

Nordic c. 21,9 (21,2–22,6) 59,0 (58,5–59,4) 84,7 (84,4–85,1)

Iceland 34,5 (27,8–41,3) 62,0 (56,8–66,8) 87,2 (83,1–90,4)

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ICR and Nordic Cancer Union (NCU)

With the Association of Nordic Cancer Registries (ANCR)

• NORDCAN• Nordic Summerschool in Cancer Epidemiology• Co-operative Nordic studies• Co-ordination of clinical information

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NORDCAN         Click on flag for language and start         Klik på flag for at vælge sprog og starte         Aloita klikkaamalla Suomen lippua         Smellið á fánann til að velja tungumál og byrja         Klikk på flagg for å velge språk og starte         Klicka på flaggan för val av språk och start

                                                                                                                                                                                                                                                                                                

                                                                                                                

http://www.ancr.nu/

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NORDCANNorðurlöndin 1945-2009

YNGRI en 35 ára

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Increasing mortality

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Decreasing mortality

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The ICR participates in several multinational projects

Examples:• NordForsk – Nordic Information for Action e-Science Center

- Increased Nordic co-operation in cervical screening- Increased precision of PSA screening by adding

measurements of other proteins and genetic factors - Developing an app/computer game for increasing attendance to cervical cancer screening• ALiCCS - Diseases in childhood cancer survivors

• NOCCA - Occupation and cancer

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Epidemiological studies

Examples of current studies• Diseases in Nordic childhood cancer survivors –> Increased risk of diseases of the heart and vascular

system, the endocrine system and other organs• Obesity surgery and cancer incidence in Nordic countries• Avoidable cancers in the Nordic countries• BRCA2 mutations/protein and cancer/survival

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BRCA2 protein protects against cancer

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BRCA2 999del5Icelandic founder mutation

Prevalence in Icelanders 0,8% - in breast cancer patients 6-7%

• 10 fold increase in breast cancer risk• 3 fold increase in prostate cancer risk• Increased risk of other cancers

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2007

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Mutation carriers had much worse prognosis than non-carriers

-> Novel results

-> Unaffected men with BRCA2 mutation should have regular PSA tests and surveillance from a young age

-> Mutation carriers with prostate cancer should receicve radical treatment - active surveillance is not an option for them

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Intracellular Location of BRCA2 Protein Expression and Prostate Cancer Progression in the Swedish Watchful Waiting CohortThorgeirsson T et al. Carcinogenesis 2016

• Most localized cancers latent - will not cause symptoms• A small minority is life threatening• Not possible to distinguish between those two groups• Overtreatment and lower of quality of life• Must find a way to distinguish latent from life threatening• Novel results – Association between cancer progression

and localization of BRCA2 protein in cells at diagnosis

2013

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ResultsMutation carriers had worse prognosis

Unexpected association between tumor characteristics and prognosis among mutation carriers:

Positive estrogen receptors (ER+) associated with poor prognosis, contrary to what is found in non-carriers

A new and larger study: Estrogen Receptor Status, Treatment and Breast Cancer Prognosis in Icelandic BRCA2 Mutation

Carriers

• 285 carriers and 570 women without the mutation• Diagnosed in 1935-2013• Results confirm the previous, unexpected, results• -> Important to know mutation status before

treatment is planned!

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Research based on ICR

Over 600 published studies

ICR is for example used in >30 studies by deCODE on cancer genetics

A cancer registry needs to be in close contact with research

–> the feedback improves validity and accuracy

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Two major goals for the ICR within next 5 years

1. Implement clincal quality registration in Icelandd in co-operation with the University Hospital and the Swedish INCA system. The possibility to compare data on prognostic factors and treatment with other countries is a pre-requisite for ensuring the best treatment for Icelandic cancer patients

2. Understand better why mutations in BRCA2 have tissue-specific risk of cancer and help to make guidelines for optimal treatment of BRCA2 carriers with breast cancer

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Thank you