Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4976
H. Skjerven, C. B. Trewin-Nybråten, Kjersti Kjersti
Increased focus on quality indicators and the use of clinical registries for breast cancer has shown higher compliance with recommended treatment in several studies. Norwegian Breast Cancer Registry (NBCR) has presented data on quality indicators since 2015. The registry is 95% complete for surgical treatment during 2015-2021. Over time, increased compliance to recommended surgical therapy has been observed. The completeness of data is, unfortunately, a problem, particularly for breast radiology outside the Norwegian mammography screening program, and for data on oncological treatment. Automation of data capture is a priority at the Cancer Registry of Norway (CRN), with the ongoing INSPIRE (INcreaSe PharmaceutIcal REporting) and SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms) projects. These projects may add important data and improve the completeness and quality of the NBCR, which is useful for improving the quality of care given to Norwegian breast cancer patients.
{"title":"The Norwegian Breast Cancer Registry (NBCR): A clinical register that monitors surgical care with the intention to increase the quality of treatment given to breast cancer patients in Norway","authors":"H. Skjerven, C. B. Trewin-Nybråten, Kjersti Kjersti","doi":"10.5324/nje.v30i1-2.4976","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4976","url":null,"abstract":"Increased focus on quality indicators and the use of clinical registries for breast cancer has shown higher compliance with recommended treatment in several studies. Norwegian Breast Cancer Registry (NBCR) has presented data on quality indicators since 2015. The registry is 95% complete for surgical treatment during 2015-2021. Over time, increased compliance to recommended surgical therapy has been observed. The completeness of data is, unfortunately, a problem, particularly for breast radiology outside the Norwegian mammography screening program, and for data on oncological treatment. Automation of data capture is a priority at the Cancer Registry of Norway (CRN), with the ongoing INSPIRE (INcreaSe PharmaceutIcal REporting) and SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms) projects. These projects may add important data and improve the completeness and quality of the NBCR, which is useful for improving the quality of care given to Norwegian breast cancer patients.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48765520","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4975
Liv Marit Dørum
Norsk sammendrag Kreftregisteret startet sitt arbeid med utvikling av kvalitetsregistre på kreftområdet i 2004. Siden da er det etablert 12 kvalitetsregistre, hvorav åtte har nasjonal godkjenning. Utvikling av kvalitetsregistrene har gått stegvis, og de første årene var oppgaven å definere hvilket dataomfang som var relevant for de ulike registrene. Utvikling av tekniske løsninger for innregistrering sto også sentralt i satsningen. I senere år har det vært stor oppmerksomhet rundt formidling av resultatene og konsekvenser for klinisk praksis. For hvert kvalitetsregister er det i dag en kvalitetsregisteransvarlig, en statistiker og et fagråd bestående av klinikere og forskere med relevant kompetanse. Pasientmedvirkning er organisert gjennom et brukerpanel der alle relevante pasientforeninger er representert. Arbeidet med kvalitetsregistrene er dessuten koordinert på tvers av kreftformer. Fra 2016 har utvalgte resultater blitt presentert som kvalitetsindikatorer med måltall og sammen med fagrådenes tolkning har disse blitt målrettet formidlet til de ulike helseforetakene. Flere helseforetak har de siste årene endret sin kliniske praksis på bakgrunn av resultater fra kvalitetsregistrene i Kreftregisteret. English summary The Cancer Registry of Norway started the work on clinical registries in 2004. Since then, 12 clinical registries have been established. The development of clinical registries has been a gradual process. The first years, the task was to define which information was relevant for the different cancer sites. Development of technical solutions for reporting was also a key issue. The organization around the clinical registries has been built up over several years. For each clinical registry, there is a registry manager, a statistician and a professional council consisting of clinicians and researchers with relevant competence. In addition, the clinical registries are coordinated across cancers. Representation from patient associations is organized in a user panel. From 2016, the establishment of quality indicators was put on the agenda. This has been the most important measure for the development of the clinical registries in the Cancer Registry. Quality indicators, results presented for each hospital and the professional councils' interpretation of the results, have been purposefully communicated to the health trusts. In recent years, several hospitals have changed their clinical practice based on results from the clinical registries in the Cancer Registry.
{"title":"Historien om kvalitetsregistrene","authors":"Liv Marit Dørum","doi":"10.5324/nje.v30i1-2.4975","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4975","url":null,"abstract":"Norsk sammendrag\u0000Kreftregisteret startet sitt arbeid med utvikling av kvalitetsregistre på kreftområdet i 2004. Siden da er det etablert 12 kvalitetsregistre, hvorav åtte har nasjonal godkjenning. Utvikling av kvalitetsregistrene har gått stegvis, og de første årene var oppgaven å definere hvilket dataomfang som var relevant for de ulike registrene. Utvikling av tekniske løsninger for innregistrering sto også sentralt i satsningen. I senere år har det vært stor oppmerksomhet rundt formidling av resultatene og konsekvenser for klinisk praksis.\u0000For hvert kvalitetsregister er det i dag en kvalitetsregisteransvarlig, en statistiker og et fagråd bestående av klinikere og forskere med relevant kompetanse. Pasientmedvirkning er organisert gjennom et brukerpanel der alle relevante pasientforeninger er representert. Arbeidet med kvalitetsregistrene er dessuten koordinert på tvers av kreftformer.\u0000Fra 2016 har utvalgte resultater blitt presentert som kvalitetsindikatorer med måltall og sammen med fagrådenes tolkning har disse blitt målrettet formidlet til de ulike helseforetakene. Flere helseforetak har de siste årene endret sin kliniske praksis på bakgrunn av resultater fra kvalitetsregistrene i Kreftregisteret.\u0000 \u0000English summary\u0000The Cancer Registry of Norway started the work on clinical registries in 2004. Since then, 12 clinical registries have been established. The development of clinical registries has been a gradual process. The first years, the task was to define which information was relevant for the different cancer sites. Development of technical solutions for reporting was also a key issue.\u0000The organization around the clinical registries has been built up over several years. For each clinical registry, there is a registry manager, a statistician and a professional council consisting of clinicians and researchers with relevant competence. In addition, the clinical registries are coordinated across cancers. Representation from patient associations is organized in a user panel.\u0000From 2016, the establishment of quality indicators was put on the agenda. This has been the most important measure for the development of the clinical registries in the Cancer Registry. Quality indicators, results presented for each hospital and the professional councils' interpretation of the results, have been purposefully communicated to the health trusts. In recent years, several hospitals have changed their clinical practice based on results from the clinical registries in the Cancer Registry.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41400400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4980
S. Hofvind, T. E. Robsahm, S. Sagstad, Jonas E. Thy
Purpose: To collect information on sociodemographic factors, health indicators, and lifestyle factors in women who attended the nationwide breast cancer-screening program, BreastScreen Norway, with the aim of investigating how these factors influence the risk of breast cancer, other cancer types, and cancer-related outcomes. Participants: The cohort data includes self-reported responses to questionnaires from 554,149 women aged 50-69 years, who attended BreastScreen Norway during the data collection period, 2006-2016. Findings to date: Information about sociodemographic factors, health indicators, and lifestyle factors was collected for the current time and retrospectively back to birth. For the cohort, we have complete mammographic screening data, including information about 24,000 breast cancer cases and other cancer types from the Cancer Registry of Norway. These outcomes are aggregating continuously. Data from the cohort have been utilized in studies related to breast cancer and menopausal status. Future projects: Data will be utilized in studies related to tumour growth and risk of breast cancer as well as other cancer types, in addition to overall and cancer-specific death. Registration: The cohort profile is not registered in Clinical Trials.
{"title":"Sociodemographic factors, health indicators and lifestyle factors among participants in BreastScreen Norway 2006-2016 – a cohort profile","authors":"S. Hofvind, T. E. Robsahm, S. Sagstad, Jonas E. Thy","doi":"10.5324/nje.v30i1-2.4980","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4980","url":null,"abstract":"Purpose: To collect information on sociodemographic factors, health indicators, and lifestyle factors in women who attended the nationwide breast cancer-screening program, BreastScreen Norway, with the aim of investigating how these factors influence the risk of breast cancer, other cancer types, and cancer-related outcomes.\u0000Participants: The cohort data includes self-reported responses to questionnaires from 554,149 women aged 50-69 years, who attended BreastScreen Norway during the data collection period, 2006-2016.\u0000Findings to date: Information about sociodemographic factors, health indicators, and lifestyle factors was collected for the current time and retrospectively back to birth. For the cohort, we have complete mammographic screening data, including information about 24,000 breast cancer cases and other cancer types from the Cancer Registry of Norway. These outcomes are aggregating continuously. Data from the cohort have been utilized in studies related to breast cancer and menopausal status.\u0000Future projects: Data will be utilized in studies related to tumour growth and risk of breast cancer as well as other cancer types, in addition to overall and cancer-specific death.\u0000Registration: The cohort profile is not registered in Clinical Trials.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45828159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Norsk sammendrag Mammografiprogrammet (engelsk: BreastScreen Norway) er det offentlige screeningprogrammet for brystkreft i Norge. Det startet som et pilotprosjekt i 1995 og ble gradvis landsdekkende frem til 2005. Programmet inviterer alle kvinner i alderen 50-69 år til mammografiscreening hvert annet år. Kreftregisteret har det administrative ansvaret for Mammografiprogrammet, mens screening skjer ved 30 screeningenheter knyttet til 17 spesialiserte brystsentre som har ansvar for diagnostikk, behandling og oppfølging. Mammografiprogrammet støtter seg på kunnskapsbaserte europeiske retningslinjer og anbefalinger. Programmet er stadig gjenstand for debatt, spesielt når det kommer til anslag for reduksjon i brystkreftdødelighet og overdiagnostikk, samt om kvinnene som inviteres tilbys tilstrekkelig informasjon til å ta et informert valg om deltagelse. Mammografiprogrammet har høy oppslutning, om lag 75% av de inviterte møter. Andelen som tilbakekalles etter screening er om lag 3,5%, mens andelen som får diagnostisert brystkreft på bakgrunn av funn på screeningbildene er rundt 0,6% av alle screenede. Målet med Mammografiprogrammet er å redusere dødeligheten av brystkreft gjennom tidlig diagnostikk. Det er også et mål å vedlikeholde og videreutvikle kvaliteten i programmet, og samtidig øke fordelene og redusere ulempene ved deltagelse. Gjennom studier undersøkes blant annet bruken av nye screeningteknikker som tomosyntese, og muligheter innenfor vurdering av mammografibilder med bruk av kunstig intelligens. Programmet ser også fremover med tanke på utvidelse av målgruppen og mer persontilpasset screening. Alle endringer i Mammografiprogrammet vil og bør være basert på tilgjengelig kunnskap og forskning. Engelsk sammendrag BreastScreen Norway targets women aged 50 to 69 years for mammography screening every other year. The program started as a pilot project in 1995, was gradually expanded and became nationwide from 2005. Internationally, the history of mammography screening started in the early 1960s, when the first randomized trial in New York began. At that time, breast cancer patients had poor survival. Now, more than 50 years later, organized mammography screening is a highly evaluated and quality assured health care service in Norway and internationally. In Norway, an essential part of building the nationwide screening program was the establishment of specialized breast centers, with a focus on efficient workflow, centralized professional competence, and multidisciplinary teamwork. Another key factor in the program is the invitation system, which is based on personal invitations with scheduled appointments automatically sent to all women in the target group. The invitation system facilitates regular participation regardless of where women live. The Norwegian model for breast screening is based on a centralized database and a shared IT system, which creates distinct opportunities for communication, quality assurance, and research. This ensures co
{"title":"Mammografiprogrammet – tidligere, i dag og i fremtiden","authors":"Solveig Hofvind, Åsne Sørlien Holen, Gunhild Mangerud","doi":"10.5324/nje.v30i1-2.4979","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4979","url":null,"abstract":"Norsk sammendrag\u0000Mammografiprogrammet (engelsk: BreastScreen Norway) er det offentlige screeningprogrammet for brystkreft i Norge. Det startet som et pilotprosjekt i 1995 og ble gradvis landsdekkende frem til 2005. Programmet inviterer alle kvinner i alderen 50-69 år til mammografiscreening hvert annet år. Kreftregisteret har det administrative ansvaret for Mammografiprogrammet, mens screening skjer ved 30 screeningenheter knyttet til 17 spesialiserte brystsentre som har ansvar for diagnostikk, behandling og oppfølging. Mammografiprogrammet støtter seg på kunnskapsbaserte europeiske retningslinjer og anbefalinger. Programmet er stadig gjenstand for debatt, spesielt når det kommer til anslag for reduksjon i brystkreftdødelighet og overdiagnostikk, samt om kvinnene som inviteres tilbys tilstrekkelig informasjon til å ta et informert valg om deltagelse. Mammografiprogrammet har høy oppslutning, om lag 75% av de inviterte møter. Andelen som tilbakekalles etter screening er om lag 3,5%, mens andelen som får diagnostisert brystkreft på bakgrunn av funn på screeningbildene er rundt 0,6% av alle screenede. Målet med Mammografiprogrammet er å redusere dødeligheten av brystkreft gjennom tidlig diagnostikk. Det er også et mål å vedlikeholde og videreutvikle kvaliteten i programmet, og samtidig øke fordelene og redusere ulempene ved deltagelse. Gjennom studier undersøkes blant annet bruken av nye screeningteknikker som tomosyntese, og muligheter innenfor vurdering av mammografibilder med bruk av kunstig intelligens. Programmet ser også fremover med tanke på utvidelse av målgruppen og mer persontilpasset screening. Alle endringer i Mammografiprogrammet vil og bør være basert på tilgjengelig kunnskap og forskning.\u0000Engelsk sammendrag\u0000BreastScreen Norway targets women aged 50 to 69 years for mammography screening every other year. The program started as a pilot project in 1995, was gradually expanded and became nationwide from 2005. Internationally, the history of mammography screening started in the early 1960s, when the first randomized trial in New York began. At that time, breast cancer patients had poor survival. Now, more than 50 years later, organized mammography screening is a highly evaluated and quality assured health care service in Norway and internationally. In Norway, an essential part of building the nationwide screening program was the establishment of specialized breast centers, with a focus on efficient workflow, centralized professional competence, and multidisciplinary teamwork. Another key factor in the program is the invitation system, which is based on personal invitations with scheduled appointments automatically sent to all women in the target group. The invitation system facilitates regular participation regardless of where women live. The Norwegian model for breast screening is based on a centralized database and a shared IT system, which creates distinct opportunities for communication, quality assurance, and research. This ensures co","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44262693","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4982
G. Hoff, E. Botteri, P. Berstad, K. Randel
{"title":"Norway – a retarded country close to 20 years since EU recommended colorectal cancer screening? A failure or a success?","authors":"G. Hoff, E. Botteri, P. Berstad, K. Randel","doi":"10.5324/nje.v30i1-2.4982","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4982","url":null,"abstract":" \u0000 ","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47826132","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4986
L. A. Berge, T. Grimsrud, R. Babigumira, N. Støer, Nita K Shala, M. Veierød, J. S. Stenehjem
Leon A.M. Berge, Tom K. Grimsrud, Ronnie Babigumira, Nathalie C. Støer, Nita K. Shala, Marit B. Veierød and Jo S. Stenehjem: Cancer epidemiology in practice: Working notes on cancer history-based selection and censoring
莱昂点Berge, Tom K. Grimsrud, Ronnie Babigumira, Nathalie C. Støer, Nita K. Shala, Marit B. Veierød和Jo S. Stenehjem:基于癌症病史选择和审查的癌症流行病学实践工作笔记
{"title":"Cancer epidemiology in practice: Working notes on cancer history-based selection and censoring","authors":"L. A. Berge, T. Grimsrud, R. Babigumira, N. Støer, Nita K Shala, M. Veierød, J. S. Stenehjem","doi":"10.5324/nje.v30i1-2.4986","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4986","url":null,"abstract":"Leon A.M. Berge, Tom K. Grimsrud, Ronnie Babigumira, Nathalie C. Støer, Nita K. Shala, Marit B. Veierød and Jo S. Stenehjem: Cancer epidemiology in practice: Working notes on cancer history-based selection and censoring","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47305567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4985
A. Engeland, W. Nystad, R. Selmer
The Cancer Registry of Norway (CRN) has been important in registry-based research in Norway for decades. The use of CRN in combination with other population-based registries and health surveys have been the basis for numerous research projects, which has contributed to fill important knowledge gaps. Researchers at the Norwegian Institute of Public Health and CRN have a long tradition of using these data sources to address research questions of common interests such as e.g. the effect of life style and diet on cancer risk. CRN and the Medical Birth Registry of Norway have co-existed for a long period, making it possible to study cancer incidence and birth characteristics over generations. During the last decades, several new registries such as the Norwegian Prescription Database and the Norwegian Patient Registry have been established, providing opportunities for studying for example drug use and cancer risk and the influence of comorbidities on the development of cancer. In the future, the CRN will be an even more valuable data source when also other population-based registries and health surveys have existed for longer time periods.
{"title":"The Cancer Registry of Norway – “a ground for scientific harvesting”","authors":"A. Engeland, W. Nystad, R. Selmer","doi":"10.5324/nje.v30i1-2.4985","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4985","url":null,"abstract":"The Cancer Registry of Norway (CRN) has been important in registry-based research in Norway for decades. The use of CRN in combination with other population-based registries and health surveys have been the basis for numerous research projects, which has contributed to fill important knowledge gaps. Researchers at the Norwegian Institute of Public Health and CRN have a long tradition of using these data sources to address research questions of common interests such as e.g. the effect of life style and diet on cancer risk. CRN and the Medical Birth Registry of Norway have co-existed for a long period, making it possible to study cancer incidence and birth characteristics over generations. During the last decades, several new registries such as the Norwegian Prescription Database and the Norwegian Patient Registry have been established, providing opportunities for studying for example drug use and cancer risk and the influence of comorbidities on the development of cancer. In the future, the CRN will be an even more valuable data source when also other population-based registries and health surveys have existed for longer time periods.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47122237","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4983
Hilde Langseth, Kristina Kymre, Tove Slyngstad, Trine B. Rounge, Randi E. Gislefoss, Marianne Lauritzen
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 differentiall
{"title":"Janus serumbank – jakten på biomarkører for kreft","authors":"Hilde Langseth, Kristina Kymre, Tove Slyngstad, Trine B. Rounge, Randi E. Gislefoss, Marianne Lauritzen","doi":"10.5324/nje.v30i1-2.4983","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4983","url":null,"abstract":"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.\u0000The 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.\u0000A 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.\u0000Today 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 differentiall","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43435894","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-12DOI: 10.5324/nje.v30i1-2.4973
Storm Hans H.
Cancer registration has been with us for decades surveilling societies for cancer incidence, trends, mortality and survival. Data are used for health care planning but even more so for research in cancer treatment, outcome and prevention – i.e. overall cancer control. With the 70th anniversary of the Cancer Registry of Norway, this paper examines the impact and role of the registry in the past and today for cancer registration and affiliated research in the Nordic countries, as well as scientific peer reviewed productivity. The Nordic collaboration in cancer-registry-based research benefits from previous and actual ongoing activities in Norway. The Cancer Registry of Norway is a prominent independent organization under Oslo University Hospital Trust for registration and registry-based cancer epidemiology, with a multidisciplinary broad-based high quality professional staff. The research portfolio includes regular cancer registration, linkage to external data e.g. occupation, biobanks and clinical data conducting analysis with clear national, Nordic and international relevance. Various threats to the ownership of cancer registries and the derived epidemiology in past, such as organizational changes and loss of independence were avoided in Norway, but the interpretation of data protection following the GDPR today causes delays or may even block the Nordic cancer registry research.
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