Cohort profile: The Swedish National Register of Urinary Bladder Cancer (SNRUBC) and the Bladder Cancer Data Base Sweden (BladderBaSe)

To monitor the quality of bladder cancer care, the Swedish National Register of Urinary Bladder Cancer (SNRUBC) was initiated in 1997. During 2015, in order to study trends in incidence, effects of treatment and survival of men and women with bladder cancer, we linked the SNRUBC to other national healthcare and demographic registers and constructed the Bladder Cancer Data Base Sweden (BladderBaSe).

The SNRUBC is a nationwide register with detailed information on 97% of bladder cancer cases in Sweden as compared with the Swedish Cancer Register. Participants in the SNRUBC have registered data on tumour characteristics at diagnosis, and for 98% of these treatment data have been captured. From 2009, the SNRUBC holds data on 88% of eligible participants for follow-up 5 years after diagnosis of non-muscle invasive bladder cancer, and from 2011, data on surgery details and complications for 85% of participants treated with radical cystectomy. The BladderBaSe includes all data in the SNRUBC from 1997 to 2014, and additional covariates and follow-up data from linked national register sources on comorbidity, socioeconomic factors, detailed information on readmissions and treatment side effects, and causes of death.

Studies based on data in the SNRUBC have shown inequalities in survival and treatment indication by gender, regions and hospital volume. The BladderBaSe includes 38 658 participants registered in SNRUBC with bladder cancer diagnosed from 1 January 1997 to 31 December 2014. The BladderBaSe initiators are currently in collaboration with researchers from the SNRUBC investigating different aspects of bladder cancer survival.

The SNRUBC and the BladderBaSe project are open for collaborations with national and international research teams. Collaborators can submit proposals for studies and study files can be uploaded to servers for remote access and analysis. For more information, please contact the corresponding author.

BMJ open. 2017 Sep 27*** epublish ***

Christel Häggström, Fredrik Liedberg, Oskar Hagberg, Firas Aljabery, Viveka Ströck, Abolfazl Hosseini, Truls Gårdmark, Amir Sherif, Per-Uno Malmström, Hans Garmo, Staffan Jahnson, Lars Holmberg

Department of Surgical Sciences, Uppsala University, Uppsala, Sweden., Department of Urology, Skåne University Hospital, Malmö, Sweden., Regional Cancer Centre South, Lund, Sweden., Department of Clinical and Experimental Medicine, Division of Urology, Linköping University, Linköping, Sweden., Department of Urology, Sahlgrenska University Hospital, Gothenburg, Sweden., Department of Urology, Karolinska University Hospital, Stockholm, Sweden., Department of Clinical Sciences, Danderyd Hospital, Karolinska Institute, Stockholm, Sweden., Department of Surgical and Perioperative Sciences, Urology and Andrology, Umeå University, Umeå, Sweden., Division of Cancer Studies, Faculty of Life Sciences and Medicine, King's College London, London, UK.

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