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It has been a long journey from typewriters, calculators, punch cards and graphs drawn on grid paper to secure data centers, cloud-based systems, machine learning, synthetic datasets and federated analysis. The goal of this article is to provide some insight to data management through the 70-year history of the Cancer Registry of Norway. We look into technology for data management and sharing of data, coding, classifications and standards, the Cancer Registry sources of information, and laws, regulations and privacy issues. The main focus of the article is data management related to our core data and variables, the so-called "main database" or "incidence database". [ABSTRACT FROM AUTHOR]

Janus is a population-based prospective cancer biobank established in 1973. The biobank consists of residual blood serum samples from more than 300 000 men and women, who participated in different health surveys in Norway or as Red Cross blood donors during the period 1972-2004. It was established on the initiative of Professor of Pathology, Olav Torgersen (1907-78), referring to the longstanding maxim that 'prevention is better than cure'. The purpose of the biobank was to build up a resource for studies of cancer aetiology and early detection of cancer, by measuring biochemical and immunological changes several years before the patient's diagnosis. The Janus cohort, with comprehensive registry-based follow-up, enables longitudinal assessment of the preclinical stage in cancer patients or the latent period before the tumour has been established, and is ideal for the search of novel biomarkers of cancer. The Cancer Registry of Norway took over the cohort in 2004. In 2019 the biobank was moved into new semi-automated storage facilities and all samples were barcoded. The biobank is annually linked to the Cancer Registry for updates on new cancer cases and by the end of 2020 the number of incident cancer cases in Janus was 107 366. A continuous work in Janus has been on quality assurance of the biospecimens by investigating sample quality parameters like the effect of different pre-processing of the samples as well as storage time and temperature. We have investigated the stability of various hormones, proteins, metabolites, electrolytes and RNAs. This work has contributed to important knowledge in establishing Good Biobank Practice in Norway. In recent years we have also shown that the trace amounts of DNA in Janus is of sufficient quality for genotyping and methylation studies. Today Janus is used in a large number of national and international studies and is an active part in several international cancer consortia. The scientific output from the biobank contains a substantial proportion of high impact papers that have contributed to increased knowledge on cancer biomarkers for use in cancer control. Many of the projects have focused on investigating the association between infections and cancer, environmental exposures and cancer and early detection biomarkers. In recent years we have identified RNAs as early detection and potentially screening biomarkers of cancer. We have developed and optimized an RNA sequencing method for samples with low input RNA and produced RNA profiles of pre-clinical samples from 1631 cancer patients and 673 cancer-free controls. The sequencing data is combined with detailed cancer information from the Cancer Registry of Norway and information on environmental exposures from health surveys, in advanced biocomputational analysis. Results published on the healthy control group shows that RNA expression levels are significantly affected by age and smoking. For lung cancer the results showed dynamic changes in differentially expressed circulating RNAs specific to histology and stage. In the future we aim to utilize Janus in omics analyses and produce large scale datasets that can be shared and used in many research projects. [ABSTRACT FROM AUTHOR]

Cochrane systematic reviews are often perceived as inaccessible. One of the main activities of the Norwegian branch of the Cochrane Collaboration is to develop ways to present the results of Cochrane reviews so that they are easier to use. In this paper we describe four main principles that underlie this work, and several of the document formats we have helped produce. Our overarching principles: 1) Information should be understandable for people who do not have expert knowledge about research methodology. When it comes to understanding the results of systematic reviews, we have experienced that the biggest difference is between researchers and non-researchers and to a lesser extent between health personnel, patients and policy makers. 2) Information should be presented in a neutral form. 3) Information should be developed using a user-oriented approach. This involves us collecting responses from the end users in our developmental work and making the necessary adjustments in several phases. 4) The information structure should follow the "1:3:25 principle" where the information is structured in several layers, with increasing level of detail. In this paper, we describe several of the document formats that we have helped develop, including Summary of Findings tables, where we present the results of Cochrane reviews in tables; a plain language summary format where the results are presented as text-based summaries written for a broad user group; SUPPORT summaries written for policy makers; and DECIDE Frameworks, where the results are presented together with other information that may be relevant in a decision making process. [ABSTRACT FROM AUTHOR]

Sleep problems are common among the elderly, and poor sleep affects health and quality of life. In this paper we will cover the characteristics of sleep in elderly patients. Sleep disorders are divided into six subgroups: insomnia, circadian rhythm sleep disorders, sleep related breathing disorders, sleep related movement disorders, hypersomnias, and parasomnias. The main focus of this paper will be on insomnia, but also the other sleep disorders will be described. Several of the sleep disorders are more common among older than younger people. Furthermore, many somatic and psychiatric disorders are associated with sleep problems, with depression being the most common comorbid disorder. A thorough patient history will uncover most of the sleep disorders, and the use of sleep diaries gives important additional information. The treatments of choice vary from non-pharmacological to pharmacological approaches, depending on the diagnosis. Chronic use of hypnotics is discouraged due to risk of tolerance and unfavourable side effects. It is vital to do a proper assessment before treatment is commenced, and appropriate treatment may have large effects -- also among elderly patients. [ABSTRACT FROM AUTHOR]

Human primary teeth can give important information about trace element exposure prenatally and in early childhood -- the period of tooth formation and the most vulnerable period in life. Trace elements from the environment and from nutrition are built into the tooth tissues during the period of tooth formation. As tooth tissues develop incrementally, according to a known pattern, and are very stable, teeth may function as recorders or biomarkers of different exposures during the period of tooth formation. In this paper the use of primary teeth as biomarkers of exposure is presented with a special focus on the use within epidemiology. [ABSTRACT FROM AUTHOR]

Background: The number of overdose deaths among heroin users in Norway is high. Treatment with the opioid antidote naloxone is available only through trained health care staff. Naloxone can also be administered as nasal spray by non-health care staff. Increasing naloxone availability may reduce both the number of overdose deaths, the risk of needlestick injuries and the transmission of blood-borne viruses such as Hepatitis C and HIV. This paper reviews the use of nasal naloxone for the treatment of opioid overdose. Material and method: We have conducted a scoping search for relevant literature on the effects of naloxone nasal spray in the electronic databases Medline, Embase and The Cochrane Library. The reports that were judged relevant based on our expertise and on predefined criteria were included in the review. No restrictions were made regarding study design or methodological quality. Conclusions are based on data from the included studies. Results: Four of the nine studies included had control groups, but only two were randomised. No study was conducted in Norway. Nasal naloxone appeared to quickly result in clinical improvement when treating overdoses that are presumably caused by opioids. Comparing injectable naloxone (as the usual route of administration) with nasal administration, the results indicate almost equally fast respiratory normalization with nasal spray. Use of naloxone nasal spray can reduce the need to inject naloxone and therefore reduces the risk of needlestick injuries among health care staff. Training of non-health care laypersons in the use of naloxone nasal spray has the potential to increase naloxone availability and knowledge about overdose events. Conclusion: We did not find enough evidence to unequivocally support the effectiveness of naloxone nasal spray. Despite the scarce evidence, naloxone nasal spray appears promising in the treatment of overdoses and it should therefore be compared with standard care in a randomised controlled trial in Norway. Training in administration for heroin users and staff at low threshold facilities should be evaluated as better availability of naloxone nasal spray can potentially reduce overdose deaths. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to examine the risk of being involved in road traffic accidents as drivers among persons using prescribed medicines by utilizing data from population-based registries. The aim of the present paper was to focus on the methodology used in the study. Methods: All Norwegians aged 18-69 in April 2004 to September 2006 (3.1 million), were included in the study. Information on prescriptions, road accidents and emigrations/deaths was obtained from three different population-based registries. A total of 22,000 accidents were observed. The incidence of accidents in exposed and unexposed person-time was compared, by the standardized incidence ratio (SIR). Results: The risk of being involved in an accident was increased in persons exposed for prescribed medicines. The risk was markedly increased in persons exposed for natural opium alkaloids, benzodiazepine tranquillizers, benzodiazepine hypnotics and carisoprodol. A marginal increase or unchanged SIRs were found for NSAIDs, selective beta-2-adrenoreceptor agonists (anti-asthmatics), calcium receptor antagonists and penicillin. Conclusions: We have tested a method using different reference groups and different exposure periods to explore the association between drug use and involvement in traffic accidents. Using these methods, we have shown that exposure for prescribed opiates, benzodiazepines and carisoprodol increased the risk of being involved in an accident as driver. The findings confirm results from other studies. Further steps should be taken to reduce car driving under the influence of these drugs. [ABSTRACT FROM AUTHOR]