About the Icelandic Cancer Registry

Registration and research

1. Background

The Icelandic Cancer Registry (ICR) was founded in 1954. 

The term Cancer Registry refers here to two things. On the one hand, it is the Icelandic Cancer Registry database and, on the other hand, the department Cancer Registry of the Icelandic Cancer Society.

The Department's activities are consistent with both the Cancer Society's Privacy- and Security Policy. All processing of personally identifiable data is subject to the Personal Data Protection Act and Processing of Personal Data no. 90/2018.

The department keeps three databases: The Icelandic Cancer Registry, The Cancer Detection Clinic Cohort Database and The Family Database.

The Cancer Registry personnel signs a confidentiality statement regarding confidentiality concerning all personally identifiable information being handled at the Registry. This is in accordance with Law no. 70/1996 on the Rights and Obligations of Government Employees

The Icelandic Cancer Registry Database

The Icelandic Cancer Registry (ICR) was founded by the Icelandic Cancer Society (ICS) in co-operation with the Directorate of Health in 1954 and contains information on all cancer and cancer precursors in Iceland as of 1955. The registry covers more than 99% of all cancer in Iceland and is a high-quality registry at the same level as the other Nordic registries. It operates according to Law on the director of health and public health no. 41/2007 and regulation no. 548/2008, and is accordingly one of the population-based Medical Registers of the Directorate of Health. The Director of Health has made an agreement with the ICS on operating, hosting, maintaining and processing of the database. The ICS and the Ministry of Health finance the registry.

The purpose of the ICR is to gain knowledge about cancer in Iceland, to monitor the diagnosis and treatment of cancer, to ensure quality and evaluate the outcome. The information can be used for quality control, for genetic counselling and for scientific research. Researchers need a permission from the National Bioethics Committee in order to access the information recorded in the ICR.

Information recorded in the Icelandic Cancer Registry is preserved until otherwise decided by law. 

The cancer registration follows the guidelines of the European Network of Cancer Registries (ENCR) and is based on international coding standards according to the International Classification of Disease (ICD) and International Classification of Diseases for Oncology (ICD-O).

Information to the ICR comes from pathology and hematology laboratories, medical departments, general practice, individual physicians and private clinics. It is usually received within two months from diagnosis. The Cause-of Death Registry and the Hospital Discharge Registry supplement information on cases that are not pathologically verified. Annual cancer statistics are published at www.cancerregistry.is and the ICS website www.krabb.is

Cancer Detection Clinic (CDC) Cohort Database

The CDC Cohort Database contains responses to questions on reproductive-, menstrual, and other risk factors from women attending cancer screening in the years 1964-2008. No information on cancer nor their precursors is recorded in the CDC Cohort Database. The database received a processing authorization with the permission of the Data Protection Commission on December 28th 2000. Researchers need permission from the National Bioethics Committee in order to access the information recorded in the CDC Cohort Database

Family Database

The Family database contains information of family relationships. No cancer or precursor information is recorded. The information comes from the Genetic Committee, published sources, church books and census records. The database received a processing authorization with the permission of the Data Protection Commission on 28 December 2000. Researchers need permission from the National Bioethics Committee in order to access the information recorded in the Family Database.

2. What is registered

The Icelandic Cancer Registry

Basic information is registered for everyone diagnosed with cancer since 1955. In addition, the same information is registered for all individuals diagnosed with breast cancer in 1910-1954 (Snaedal G. Cancer of the breast. A clinical study of treated and untreated patients in Iceland 1911–1955.Acta Chir Scand1965,90 Suppl 338:1)

Prospective registration of predictive factors began in 1998 for prostate cancer and in 2010 for cancers of the breast, colon and rectum, as well as melanoma. In addition, incomplete information exists for earlier years.

Quality registration for cancer started in 2017 and is in accordance with the Swedish quality registration system called INCA, see item 3. Quality registration for cancer.

The CDC Cohort Database

The database contains information on age at first birth, parity, breast feeding, use of oral contraceptives and menopausal hormones, smoking, height and weight.

Family Database

3. Quality registration of cancer

In cooperation with Landspitali, The National University Hospital of Iceland, quality registration of cancer began in 2017 and is in accordance with the Swedish quality registration system called INCA. Registration has begun via Landspitali Health Portal for prostate, breast, colon and rectal cancer, and more sites will be added in the near future.

4. Research

Over 600 scientific researches in collaboration with national and foreign members, using data from the Icelandic Cancer Registry, have been published. The registry staff has a comprehensive experience in epidemiology, statistics, registration, handling and presentation of data.

The cancer registry participated in the long-term study of Merck Sharp and Dohme on the efficacy and effects of vaccine directed against four strains of HPV (Human Papilloma Virus) causing cervical cancer and genital warts.

5. International collaboration

The Department of Cancer Registry is a member of the Association of Nordic Cancer Registries (ANCR). Board meetings are twice a year, as well as an annual conference. The five countries (Dk, Fi, Ice, No, Sv) take turns in being in charge. On behalf of the association, Nordic researches are conducted and the interactive project NORDCAN, a database of cancer statistics for the Nordic countries, is accessible to everyone at the web.

ANCR runs the Nordic Summer School in Epidemiology of Cancer and the Icelandic Cancer Registry has a representative in the school board since its establishment in 1990. The ANCR activities of have received considerable financial support from the Nordic Cancer Union (NCU).

EUROCARE is a cooperation of European Cancer Registers, comparison of survival for cancer patients. European Network of Cancer Registries (ENCR) provides seminars and registration‘s guidelines.

Co-operation with the International Agency for Research on Cancer (IARC) in Lyon in France and the GLOBOCAN database provides cancer information for most of the countries in the world. Finally, recent information source for cancer in Europe (ECIS) supported by the ENCR, EUROCARE and IARC.

Cancer statistic is sent and published in international publications and databases . Publication of statistical information is always anonymous.

6. Service to Genetic Counseling of Landspitali

 The Icelandic Cancer Registry delivers information used for genetic counseling to patients with cancer. This activity is growing and is carried out by the Department of Genetic and Molecular Medicine of Landspítali. This is done according to the permission of the Data Protection Authority

7. Access to data

Anyone can use information published on the registry‘s website. General statistical information can be processed on request. Inquiry that require substantial work may be charged for the survices.

The cancer registry emphasizes to provide scientists access to data, necessary for their research. The researchers submit an application on a special applicationform , as well as research plan, approved by the Science Ethics Committee.

Researchers receiving Registry data need to sign up for the receipt and sign a Terms of Use Declaration. In such a signature, the recipient commits himself to take care of the confidential data in a secure manner and that only those authorized have access to data. Furthermore, the data will only be used for the purpose stated in the approved research plan and that that data will be deleted or returned at end of study. Research findings should not contain any personally identifiable information.

Data on the Cancer REgistry website may be used.

Please use the recommended references:

         The Icelandic Cancer Register of the Icelandic Cancer Society

        http://www.krabb.is/krabbameinsskra accessed dd.mm.yyyy

8. Access to own personal information

According to the privacy legislation that transposed in Iceland on July 15, 2018, individuals have the right to obtain personal information registered in the Cancer Registry of Iceland as well as how they are used.

To access own personal information, a form is filled out and brought to the Cancer Registry, Skogarhlid 8, 3^th floor left.

Requests for access to personal data will not be accepted by mail, email or telephone.

The person in question must provide personal identification issued by public authorities when the application is submitted.

Subsequently, the person concerned will be contacted regarding further arrangements of delivering the information. An attempt is made to deliver information within 30 days of receipt of the request.

These dispositions are necessary as the Cancer Registry works with sensitive personal information and have to guarantee that information is only delivered to those which they concern.