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Impressions from SND workshop on data management plans Click here to read the newsletter!

https://www.lupop.lu.se/article/new-issue-lu-snddosp-newsletter - 2025-11-06

The Board of EAO (European Association for Osseointegration) has discussed an initiative to explore the conditions to establish a Dental Implant Register. It was suggested to bring this issue to the EAO Consensus Conference 2018 for a discussion and to possibly propose relevant and manageable parameters. This article presents some select examples from quality registers in the medical field. New pu

https://www.lupop.lu.se/article/dental-implant-quality-register-possible-tool-further-improve-implant-treatment-and-outcome - 2025-11-06

Internet-based reporting for patient-reported outcomes in a clinical setting resulted in similar data for VASs and corresponding disease activity scores to clinic-based reporting on paper forms. New publication in Scandinavian Journal of RheumatologyRead more here

https://www.lupop.lu.se/article/comparison-agreement-between-internet-based-registration-patient-reported-outcomes-and-clinic-based - 2025-11-06

Over the last decades the advent of digital documentation has provided research communities with valuable resources of information for clinical research. To utilize the potential of information about patients, their health care, and its outcome that is already available in different registers, the possibility to cross-reference information from different registers is inevitably required. New publi

https://www.lupop.lu.se/article/de-identified-linkage-data-across-separate-registers-proposal-improved-protection-personal - 2025-11-06

Surgery for oesophageal and gastric cancers is associated with high morbidity, mortality and poor quality of life postoperatively. The Finnish National Esophago-Gastric Cancer Cohort has been established with the aim of identifying factors that could contribute to improved outcomes in oesophago-gastric cancer. New publication in BMJ Open.Read more here

https://www.lupop.lu.se/article/finnish-national-esophago-gastric-cancer-cohort-finego-studying-outcomes-after-oesophageal-and - 2025-11-06

En fallstudie av några forskningsorienterade institutioner Läs mer här

https://www.lupop.lu.se/article/externfinansieringens-roll-i-svensk-hogskoleforskning - 2025-11-06

In Sweden, the results of the TASTE trial were impactful in daily clinical practice and led to a relevant decrease in TA use in ST-segment-elevation myocardial infarction patients undergoing percutaneous revascularization. New publication in Circulation Cardiovascular interventions.Read more here.

https://www.lupop.lu.se/article/assessing-nationwide-impact-registry-based-randomized-clinical-trial-cardiovascular-practice - 2025-11-06

The revised GEP are addressed to everyone involved in the planning, preparation, execution, analysis, and evaluation of epidemiological research, as well as research institutes and funding bodies. New publication in European Journal of EpidemiologyRead more here

https://www.lupop.lu.se/article/guidelines-and-recommendations-ensuring-good-epidemiological-practice-gep-guideline-developed-german - 2025-11-06

Nätverks-nytt nr 2, april 2019 Läs mer här

https://www.lupop.lu.se/article/nyhetsbrev-snd-natverket - 2025-11-06

Acromegaly is a rare disease, associated with multiple organs and systems damage. Thanks to implementation of registries, systematic data gathering, knowledge sharing and standardizing medical practices for optimal care greatly improved. New publication in Best practice & Research. Clinial Endocrinology & MetabolismRead more here

https://www.lupop.lu.se/article/national-acromegaly-registries - 2025-11-06

Data repositories have the potential to play an important role in the effective and safe sharing of individual-participant data (IPD) from clinical studies. We analysed the current landscape of data repositories to create a detailed description of available repositories and assess their suitability for hosting data from clinical studies, from the perspective of the clinical researcher. New publica

https://www.lupop.lu.se/article/evaluation-repositories-sharing-individual-participant-data-clinical-studies - 2025-11-06

Abolishment of the confidentiality agreement for data requests is expected to speed up the delivery process of data from SoS. According to a post on linkedin.com, the Swedish National Board of Health and Welfare (Socialstyrelsen, SoS) has abolished the confidentiality agreement for data requests.

https://www.lupop.lu.se/article/faster-delivery-sos-data - 2025-11-06

Recent prostate cancer screening trials have given conflicting results and it is unclear how to reduce prostate cancer mortality while minimising overdiagnosis and overtreatment. Prostate cancer testing is a partially observable process, and planning for testing requires either extrapolation from randomised controlled trials or, more flexibly, modelling of the cancer natural history. New publicati

https://www.lupop.lu.se/article/natural-history-model-planning-prostate-cancer-testing-calibration-and-validation-using-swedish - 2025-11-06

The presentations from the DMP seminar are now available on lupop.lu.se You can find the presentations here.

https://www.lupop.lu.se/article/presentations-dmp-seminar - 2025-11-06

Intervju med Anna Axmon från LUPOP om vad LUPOP gör och varför man ska dela sina forskningsdata Läs mer här!

https://www.lupop.lu.se/article/las-om-lupop-i-medicinska-fakultetens-nyhetsbrev - 2025-11-06

To present the Uppsala Longitudinal Adolescent Depression Study, initiated in Uppsala, Sweden, in the early 1990s. The initial aim of this epidemiological investigation was to study the prevalence, characteristics and correlates of adolescent depression, and has subsequently expanded to include a broad range of social, economic and health-related long-term outcomes and cost-of-illness analyses. Ne

https://www.lupop.lu.se/article/uppsala-longitudinal-adolescent-depression-study-ulads - 2025-11-06

In a prestudy project LTH, RISE and Mobile Heights have run workshops with companies and public agencies to explore bridges and barriers for Swedish companies regarding sharing data between private and public stakeholders. The area is till in its infancy, but we have identified several interesting potentials to utilise and important hinders to address. This breakfast seminar will summarise the fin

https://www.lupop.lu.se/article/digitlth-breakfast-seminar-open-collaborative-data - 2025-11-06

The efficacy of early supported discharge (ESD) has not been tested in current stroke care setting, which provide relatively short hospital stays, access to hyper-acute therapies and early carotid stenosis interventions. This study aimed to compare patient-reported outcome measures (PROM) among patients with stroke that received modern stroke unit care with or without ESD. New publication in BMC N

https://www.lupop.lu.se/article/effect-early-supported-discharge-after-stroke-patient-reported-outcome-based-swedish-riksstroke - 2025-11-06

To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. New publi

https://www.lupop.lu.se/article/flaunting-our-assets-making-most-nordic-registry-goldmine-cerebral-palsy-example - 2025-11-06

Trots stora satsningar på forskning halkar Sverige efter i forskningskvalitet. Under detta frukostseminarium presenterar Vetenskapsrådet tolv särskilt angelägna punkter för ett svenskt forskningssystem i världsklass. Datum: 21 maj 2019Tid: 08.30-09.30Arrangör: VetenskapsrådetSvensk forskning står inför ett antal utmaningar. Vi satsar mycket pengar på forskning, har en befolkning med högt förtroend

https://www.lupop.lu.se/article/vagval-framtidens-forskningssystem - 2025-11-06