Krabbameinsskrá Krabbameinsfélags Íslands The Icelandic Cancer Registry ICR Laufey Tryggvadóttir Managing director of the Icelandic Cancer Registry Clinical professor, Faculty of Medicine, University of Iceland MY Pacjency - WE PATIENTS Foundation June 7th, Skógarhlíð 8
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Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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%
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
20Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
With the Association of Nordic Cancer Registries (ANCR)
• NORDCAN• Nordic Summerschool in Cancer Epidemiology• Co-operative Nordic studies• Co-ordination of clinical information
Krabbameinsskrá Krabbameinsfélags Íslands
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
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
BRCA2 protein protects against cancer
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
2007
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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!
Krabbameinsskrá Krabbameinsfélags Íslands
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
Krabbameinsskrá Krabbameinsfélags Íslands
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