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Cohort profile: The Swedish National Register of Urinary Bladder Cancer (SNRUBC) and the Bladder Cancer Data Base Sweden (BladderBaSe)
  1. Christel Häggström1,2,
  2. Fredrik Liedberg3,4,
  3. Oskar Hagberg5,
  4. Firas Aljabery6,
  5. Viveka Ströck7,
  6. Abolfazl Hosseini8,
  7. Truls Gårdmark9,
  8. Amir Sherif10,
  9. Per-Uno Malmström1,
  10. Hans Garmo11,12,
  11. Staffan Jahnson6,
  12. Lars Holmberg1,11
  1. 1 Department of Surgical Sciences, Uppsala University, Uppsala, Sweden
  2. 2 Department of Biobank Research, Umeå University, Umeå, Sweden
  3. 3 Department of Urology, Skåne University Hospital, Malmö, Sweden
  4. 4 Department of Translational Medicine, Lund University, Malmö, Sweden
  5. 5 Regional Cancer Centre South, Lund, Sweden
  6. 6 Department of Clinical and Experimental Medicine, Division of Urology, Linköping University, Linköping, Sweden
  7. 7 Department of Urology, Sahlgrenska University Hospital, Gothenburg, Sweden
  8. 8 Department of Urology, Karolinska University Hospital, Stockholm, Sweden
  9. 9 Department of Clinical Sciences, Danderyd Hospital, Karolinska Institute, Stockholm, Sweden
  10. 10 Department of Surgical and Perioperative Sciences, Urology and Andrology, Umeå University, Umeå, Sweden
  11. 11 Division of Cancer Studies, Faculty of Life Sciences and Medicine, King’s College London, London, UK
  12. 12 Regional Cancer Centre Uppsala/Örebro, Uppsala, Sweden
  1. Correspondence to Dr Christel Häggström; christel.haggstrom{at}umu.se

Abstract

Purpose 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).

Participants 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.

Findings to date 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.

Future plans 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.

  • Bladder cancer
  • radical cystectomy
  • register linkage
  • quality register

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors CH, FL, SJ and LH initiated the study and drafted the manuscript. FL, FA, VS, AH, TG, AS, P-UM and SJ contributed with data, and CH, OH and HG analysed data. All authors revised the manuscript and approved the final version to be published.

  • Funding This work was supported by the Swedish Cancer Society, grant number CAN 2013/472.

  • Competing interests None declared.

  • Ethics approval This study was approved by the Research Ethics Board at Uppsala University, Sweden.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Annual reports from the SNRUBC are available online at http://www.cancercentrum.se/vast/cancerdiagnoser/urinvagar/urinblase-och-urinvagscancer/ kvalitetsregister/. Collaborators can propose and apply for studies in the BladderBaSe using a standardised form. After approved application, the project data administrators can upload study-specific files with selected variables to a server for statistical analysis through remote access. Users of this system will be charged for software licences, data administration and for preprocessing of study files. For more information contact the corresponding author.

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