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.

Socioeconomic status and diagnosis, treatment, and mortality in men with prostate cancer. Nationwide population‐based study

“…We conducted a cohort study of men with Pca diagnosed between 2007 and 2014 and registered in the National Prostate Cancer Register of Sweden (NPCR) 9, 10, 11. NPCR captures 98% of all incident Pca cases in Sweden since 1998 compared to the Swedish Cancer Register to which reporting is mandated by law.…”

“…NPCR contains detailed information on primary treatment and cancer characteristics, including a modified version of the National Comprehensive Cancer Network (NCCN) Pca risk categories9: low‐risk (local clinical stage T1–2, Prostate‐specific antigen (PSA) <10 ng/mL and, Gleason score (GS) ≤6), intermediate‐risk (T1–2, Gleason score 7 and/or PSA 10 to <20 ng/ml), high‐risk (T3 and/or Gleason score 8–10 and/or PSA 20 to <50 ng/ml), regionally metastatic (T4 and/or N1 and/or PSA 50 to <100 ng/ml in the absence of distant metastases (M0 or Mx)) and distant metastases (PSA ≥100 ng/mL or M1). Further risk categories that we applied in specific analyses were very low‐risk (age <75, cT1, Gleason score (GS) ≤6, PSA <10 ng/ml, PSA density <0.15, number of biopsy cores positive for cancer ≤4, cancer extension at biopsy <8 mm) and very high‐risk (T4, 50 ≤ PSA < 200 ng/ml, any N, M0) 9. In May 2016, NPCR was linked to the Prescribed Drug Registry, the Patient Registry, the Cause of Death Register, the Longitudinal database on socioeconomic factors (acronym in Swedish LISA) and the Register of Total Population and Population changes to generate Prostate Cancer data Base Sweden (PCBaSe) RAPID.…”

Socioeconomic status and diagnosis, treatment, and mortality in men with prostate cancer. A nationwide population-based study

“…[9][10][11] NPCR captures 98% of all incident Pca cases in Sweden since 1998 compared to the Swedish Cancer Register to which reporting is mandated by law. NPCR contains detailed information on primary treatment and cancer characteristics, including a modified version of the National Comprehensive Cancer Network (NCCN) Pca risk categories 9 : low-risk (local clinical stage T1-2, Prostate-specific antigen (PSA) <10 ng/mL and, Gleason score (GS) 6), intermediate-risk (T1-2, Gleason score 7 and/or PSA 10 to <20 ng/ml), high-risk (T3 and/or Gleason score 8-10 and/or PSA 20 to <50 ng/ml), regionally metastatic (T4 and/or N1 and/or PSA 50 to <100 ng/ml in the absence of distant metastases (M0 or Mx)) and distant metastases (PSA 100 ng/mL or M1). Further risk categories that we applied in specific analyses were very low-risk (age <75, cT1, Gleason score (GS) 6, PSA <10 ng/ml, PSA density <0.15, number of biopsy cores positive for cancer 4, cancer extension at biopsy <8 mm) and very high-risk (T4, 50 PSA < 200 ng/ml, any N, M0).…”

1008 How to model temporal changes in comorbidity for cancer patients using prospective cohort data

“…Prostate Cancer data Base Sweden (PCBaSe Sweden) consists of the National Prostate Cancer Register of Sweden (NPCR) linked to a number of different nationwide registers [6]. NPCR became nationwide in 1998 and covers 98 % of all newly diagnosed, biopsyconfirmed cases of prostate cancer, as compared to the Swedish Cancer Registry.…”

“…5 Department of Surgical and Perioperative Sciences, Urology and Andrology, Umeå University, Umeå, Sweden. 6 Regional Cancer Centre, Uppsala Örebro, Uppsala, Sweden.…”