Swedish Colorectal Cancer Registry (SCRCR)

• Registry Manager: Västerbotten County Council
• Registry Centre - affiliation: Regional Cancer Centre North
• Start year: 1995
• Classifications used: ICD10, PAD
• This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Primary Care, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

Treatment for colorectal cancer is complicated and results have varied considerably through the years in Sweden. Due to these differences, a national quality registry for rectal cancer was started in 1995. This registry led to advances in treatment that achieved equitable treatment in Sweden for rectal cancer, but also resulted in better treatment for rectal cancer than for colon cancer. The colon cancer registry was therefore started in 2007. In the beginning, both registries were pure surgical quality registries. However, now oncological treatment and diagnostics are also registered.

Purpose of the registry:

• to monitor colorectal cancer treatment in Sweden
• selection of surgical method, utilisation of perioperative resources and additional treatments
• register how new technology is used and new knowledge disseminated in Sweden
• enable studies of a purely epidemiological nature
• many reports have been published on the colorectal cancer registry
• look at different efficacy variables regarding pathology quality, surgery quality, and how patients gain access to the various additional treatments.

The annual report presents current data for the past year as well as follow-up data for three and five years for long-term cancer outcomes.

Population

The registry includes all diagnosed cases of rectal cancer (from 1995 onwards) and colon cancer (from 2007 onwards). For inclusion, the case must be invasive with ICDO codes C209 and C18, and PAD codes 096 and 996. No cases found during autopsy are registered. About 52,000 cases are included in the registry.

Ages in the registry

All ages.

Total volume of registry

52,000 cases and 51,000 patients.

Volume over the past operating year

6000 cases and 5870 patients.

Coverage rate

99.5 percent.

References on validations

Two studies are being conducted (2012), but are not yet published. Six key variables – type of surgery, TNM stage, postoperative mortality, rectal perforation and leakage – for a selection of patients with the diagnosis were validated in 1996 through comparison with registry data and records by an independent observer. The validation showed a difference of less than five percent (Påhlman 2007).

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.