WP 2 Research data management and availability

Work package leader:

Professor Tom Wilsgaard

Main objective: 

To provide easy access to research data, including online analysis of data.

Title Description Pl Participants Collaborators Status
Data sources for research Present an overview of major population baseds data sources to be used by the Healthy Choices project        
The Tromsø Study The Tromsø Study is conducted in the municipality of Tromsø (current pop. 75,000), and is Norway's most longstanding and comprehensive cohort study. It comprises questionnaire data, biological specimens, clinical measurements and disease endpoint registries which are updated annually (national death and cancer registries). It was initiated in 1974 to study risk factors, causes and prevention of CVD. Throughout seven consecutive surveys over the past 44 years, it has expanded to cover a wide range of risk factors, chronic diseases, use of health care services and disease endpoints. Clinical examinations comprise echocardiography, carotid ultrasound, electrocardiograms, body composition, retinal photography, pain sensitivity, spirometry etc. Altogether 45,473 persons have participated at least once and 18,510 have participated at least three times. Attendance rates between 65-77 % are among the highest in Norwegian cohort studies.  Sameline Grimsgaard      
Fit Futures Fit Futures is a part of the Tromsø Study, was initiated in 2010 and invited all high school students in Tromsø and the neighboring Balsfjord municipalities. A total of 1,038 (93% response rate) first year students participated in 2010 and 870 took part in the follow-up examination two years later. The study comprises questionnaire data, anthropometric and clinical measurements, and biological samples. Anne-Sofie Furberg      
The SAMINOR Study The SAMINOR Study is a population-based study addressing the deficiencies of health information on ethnic groups in Finnmark municipalities and other municipalities with Sami and Norwegian populations. SAMINOR 1 included inhabitants aged 30 and 35 – 79 years in 24 selected municipalities. The SAMINOR 2 Questionnaire Survey  was performed in the same areas as SAMINOR 1, and was followed by a clinical survey in 10 selected municipalities. Questions on ethnicity were identical in all three surveys, and the study design included both self-perceived ethnicity and identity and objective and subjective criteria on Sami language, enables categorization of participants into indigenous versus non-indigenous groups. Ann-Ragnhild Broderstad      
The Norwegian Women and Cancer Study The Norwegian Women and Cancer Study (NOWAC) is a randomly sampled, nationally representative prospective cohort study of 30-70 year-old (at entry) women initiated in 1991, with study participants enrolled in 1991-92 (n=57 561), 1995-97 (n=44,836), and 2003-05 (n=70,081). The majority have filled in at least two follow-up questionnaires. The questionnaire includes detailed lifestyle information including SES and childhood conditions. Venous blood, and normal and pathological breast tissue, were collected in the 2003-2005 enrollees. The detailed and repeated information for each participating woman in a national representative study population, gives a unique opportunity to estimate population attributable fractions (PAFs) for possible single and/or combined risk factors for cancer and other non-communicable disease endpoints. Torkjel Sandanger      
Norwegian Armed Forces Health Registry The Norwegian Armed Forces Health Registry has since 1968 stored data on the health status of more than 1.3 million conscripts (8000 of these were women) born between 1950 and 2000. All conscripts have been subject to a through physical examination in addition to physical and mental performance tests.        
Historical population register (HBR) Historical population register (HBR) includes information on the Norwegian population from 1800-1964 and is administered by the Historical Registration Unit, at the Faculty of history, social sciences and teaching, UiT. Data are stored in EUTRO.        
The Finnmark Study A total of 7 surveys in the county of Finnmark were carried out between 1974 and 2003 and provide very rich data material for analyses. The screening program structure ensured repeated measurements in a large number of attendees.        
Other data sources are available Other data sources are available through linkage between studies using the personal identification number. National health registries include Cause of Death registry, Cancer Registry, Medical Birth Registry, Norwegian Patient Registry, Norwegian Prescription Registry and others.         
Easy access to research data: online data shopping and data analysis  Data harmonization is crucial for research across population studies. EUTRO is a module-based unique database solution for research, developed at the Dept of community medicine, UiT. It is used for data registration, storage and retrieval, administration of biobank samples, and project administration. EUTRO is built on the Oracle database system and uses QBE Vision as a programming tool. This e-infrastructure was approved by the Norwegian Data Protection Authority in 2006, and was recommended for ISO certification. By using EUTRO combined with the NESSTAR WebView system developed by NSD, variables and metadata can be presented on the Internet. EUTRO is in use at UiT to manage data from the Tromsø Study (http://tromsoundersokelsen.uit.no/tromso/), SAMINOR, and other large-scale research datasets. The Cohort of Norway Network (CONOR) (http://conor.uit.no/conor/ ) dataset is also presented by NIPH through the EUTRO/NESSTAR solution. Health Registries for Research (HRR) (RCN-funded infrastructure project) is using EUTRO to present variables and metadata from national health registries (http://HRR.uit.no/hrr. EUTRO thus fulfils the EU criteria for technology readiness level 6 and GDPR requirements. Data from all seven surveys in the Tromsø Study have been harmonized, and researchers can access variables online for approved research projects. As a part of this proposal, we will harmonize research data of the NOWAC Study with the Tromsø and Finnmark Studies as well as SAMINOR to facilitate analyses across cohorts. We will use EUTRO/NESSTAR to present the variables at our Healthy Choices online portal. We are working closely with the Directorate of e-health to make research data available at a national online Health Analysis Platform (Helseanalyseplattformen). The platform is under construction, using IT architecture principles developed by our EUTRO system developers. We anticipate that it will be possible to link data from the cohort studies to national health registries and the Historical Population Registry, and will use the current EUTRO solution to prepare our datasets for future online analyses at the Health Analysis Platform at helsenorge.no Hans-Henry Jacobsen