title: Cohort Profile: the National Prostate Cancer Register of Sweden and Prostate Cancer data Base Sweden 2.0.
abstract: In 1987, the first Regional Prostate Cancer Register was set up in the South-East health-care region of Sweden. Other health-care regions joined and since 1998 virtually all prostate cancer (PCa) cases are registered in the National Prostate Cancer Register (NPCR) of Sweden to provide data for quality assurance, bench marking and clinical research. NPCR includes data on tumour stage, Gleason score, serum level of prostate-specific antigen (PSA) and primary treatment. In 2008, the NPCR was linked to a number of other population-based registers by use of the personal identity number. This database named Prostate Cancer data Base Sweden (PCBaSe) has now been extended with more cases, longer follow-up and a selection of two control series of men free of PCa at the time of sampling, as well as information on brothers of men diagnosed with PCa, resulting in PCBaSe 2.0. This extension allows for studies with case-control, cohort or longitudinal case-only design on aetiological factors, pharmaceutical prescriptions and assessment of long-term outcomes. The NPCR covers >96% of all incident PCa cases registered by the Swedish Cancer Register, which has an underreporting of <3.7%. The NPCR is used to assess trends in incidence, treatment and outcome of men with PCa. Since the national registers linked to PCBaSe are complete, studies from PCBaSe 2.0 are truly population based.
authors.affiliation: King's College London, School of Medicine, Division of Cancer Studies, Cancer Epidemiology Group, London, UK, Regional Cancer Centre, Uppsala University Hospital, Uppsala, Sweden, Department of Nursing, Umeå University, Umeå, Sweden, Department of Radiation Sciences, Oncology, Umeå University, Umeå, Sweden, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden, Oncological Centre, CLINTEC Department, Karolinska Institutet, Stockholm, Sweden, Deparment of Urology, Linköping University Hospital, Linköping, Sweden, Department of Urology, Örebro University Hospital and Örebro University, Department of Surgical and Perioperative Sciences, Urology and Andrology, Umeå University, Umeå, Sweden and Department of Surgery, Urology Service, Memorial Sloan-Kettering Cancer Center, New York, New York, USA.
authors.forename: Mieke
authors.initials: M
authors.lastname: Van Hemelrijck
authors.forename: Annette
authors.initials: A
authors.lastname: Wigertz
authors.forename: Fredrik
authors.initials: F
authors.lastname: Sandin
authors.forename: Hans
authors.initials: H
authors.lastname: Garmo
authors.forename: Karin
authors.initials: K
authors.lastname: Hellström
authors.forename: Per
authors.initials: P
authors.lastname: Fransson
authors.forename: Anders
authors.initials: A
authors.lastname: Widmark
authors.forename: Mats
authors.initials: M
authors.lastname: Lambe
authors.forename: Jan
authors.initials: J
authors.lastname: Adolfsson
authors.forename: Eberhard
authors.initials: E
authors.lastname: Varenhorst
authors.forename: Jan-Erik
authors.initials: JE
authors.lastname: Johansson
authors.forename: Pär
authors.initials: P
authors.lastname: Stattin
mesh_terms: D000230:Adenocarcinoma / Q000453:epidemiology*; D000328:Adult; D000368:Aged; D016208:Databases, Factual; D011307:Drug Prescriptions / Q000706:statistics & numerical data; D004812:Epidemiologic Methods; D006801:Humans; D008297:Male; D008875:Middle Aged; D011471:Prostatic Neoplasms / Q000453:epidemiology*; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology; D013548:Sweden / Q000453:epidemiology; D014549:Urinary Incontinence / Q000453:epidemiology