Rejestr nowotworów w Islandii

The Icelandic Cancer Registry, ICR

Laufey TryggvadóttirManaging director, Icelandic Cancer Registry

Clinical professor, Faculty of Medicine, University of Iceland

MY PACJENCY - WE PATIENTS Foundation November 15th 2016, Dom Technika NOT, Warsaw

W pliku nie można odnaleźć części obrazu z identyfikatorem relacji rId13.

Projekt nr 07/01/2015/IV "Rejestr nowotworów jako skuteczne narzędzie profilaktyki onkologicznej" współfinansowany z środków Funduszu Współpracy Dwustronnej na poziomie programu PL07

Mission of the ICR

Top Quality Cancer RegistrationFirst Class Epidemiological Research

Overarching aim To improve public health



PIN and Electronic Record Linkage in Iceland

• Personal Identification Number (PIN)• Used from birth to death for all contact with the

health system• Used for all types of data on individuals, e.g.

exposure-related information, financial system...• Therefore: Acquisition of data plus

epidemiological studies for public health purposes are effective and accurate

Krabbameinsskrá Krabbameinsfélags Íslands

UH Laboratory

Basic Resources

Supplementary

National Register

Private Lab.

Akureyri Hosp Lab.

Inpatient register

Death certificates

Patient files – Online -

Icelandic Cancer

Registry

ExposureBirth Register

Pharmaceutical data

Heart Association Cohort

Genetic data

Etc.



PathologicDataReceivedbyICS– threelaboratories

National University Hospital Department of Pathology

A private pathology laboratory

Akureyri Hospital Laboratory

~ 90%

~ 6%



SupplementaryDatafromOtherRegistries

Hospital Discharge RegistryDirectorate of Health

Death CertificatesDirectorate of Health

~ 4%



DCI 4.4%Death Certificate Initiated

DCO 0.3%Death Certificate Only



Patientinformation

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



ElectronicDataProcessing

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



Qualitycontrol

Pathology reports read by registrars

checking for inconsistencies and

information that can not be extracted electronically

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



QualityRegistrationtodriveupthequalityofcare

allowscomparisonwithothercountries

TNM and selected clinical variables

for a few cancer sitessince 2010

Prostate cancer since 1998

Swedish INCA system used as a model

Co-operation with INCA for registration and output

Treatment and more variables in 2017



Dataprotection

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



Individualdata

Individual data delivered for research

Dependent on permissions from National Bioethics Committee and Data Protection Authority

Record linkage using PIN or replacing PIN with individual study numbers – key kept until end of study



Aggregatedata

Data published 11 months after end of

each year

Tables and graphsIncidence, mortality and

survival

www.cancerregistry.is

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





IcelandicCancerRegistry

•1954: Established by Icelandic Cancer Society (ICS) ICS - A grassroots organization aiming at prevention of cancer and benefitting cancer patients

• Nationwide cancer incidence since 1955

• 2007: Legislation on Directorate of Health and Public Health

- Nationwide cancer registration obligatory- Deliverance of data obligatory





Research

•Prognosis of cancer patients

• Nordic studies -> PIN numbers & Nationwide Health Registers

• Etiology of breast cancer – genes/environment

• BRCA2 mutations; risk, treatment, prognosis• International comparison – aggregate data

• Effects of population-based screening for cancer







NORDCANClick on flag for language and startKlik på flag for at vælge sprog og starteAloita klikkaamalla Suomen lippuaSmellið á fánann til að velja tungumál og byrjaKlikk på flagg for å velge språk og starteKlicka på flaggan för val av språk och start

http://www.ancr.nu/











Relative survival (5-year)















International cooperation

1. Association of Nordic Cancer Registries (ANCR)

2. NORDCAN datbase – incidence, prevalence, mortality, survival

3. ALICCS – population-based follow-up study of Nordic childhood cancer patients

4. INCA – co-ordinated registration of prognostic variables and treatment of cancer

5. EUROCARE survival in Europe, HR studies

6. Cancer Incidence in 5 continents (CIV) -> GLOBOCAN

7. CONCORD – survival worldwideNomesco, OECD, WHO



Epidemiologicalstudies

Examplesofcurrentstudies• BRCA2mutations/proteinandcancer/survival





Research based on ICR

Over 600 published studies

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

A cancer registry needs to be in close contact with research



Implementation of Clincal Quality Registration in co-operation with Swedish INCA system and University HospitalImproved understanding of the nature of mutations in BRCA2 – clinical and preventive implications

Next 5 years - ICR



Efficient and accurate electronic record linkage with all types of databases allows high-quality registration and researchThe support of the grassroot organization ICS has enabled high-quality cancer registration plus epidemiological research in Iceland since 1954High-quality cancer registries constitute a very important tool for enhancing public health

Conclusions

Krabbameinsskrá Krabbameinsfélags Íslands

Thank you

Health & Medicine

Rejestr nowotworów w Islandii