2 April 2016

National Quality Registry for Pancreatic and Periampullary Cancer

  • Registry Manager: Östergötland County Council
  • Registry Centre - affiliation: Regional Cancer Centre South East
  • Start year: 2010
  • Classifications used: ICD10
  • This registry contains data on: Diagnoses, Interventions, Inpatient Care, Risk Factors, Follow-up Data 6-11 months after the case is registered in the registry, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

Pancreatic cancer is a relatively common form of cancer. Approximately 1,000 cases are diagnosed every year in Sweden. The condition is most often discovered at a late stage and the cancer is already widely spread at detection in 85 to 90 percent of patients.

The Swedish Association for Upper Abdominal Surgery (SFÖAK) aims to strengthen the quality of work in various surgical areas through this National Quality Registry.

The objective of the National Quality Registry for Pancreatic and Periampullary Cancer is to register all tumours in this area where malignancy is suspected.

Purpose and objectives:

  • to register all patients with suspected tumours in this area
  • to register all pancreatic surgery in which malignant disease is suspected
  • to register complications, survival and quality of life before and after treatment
  • to ensure that the register is designed in a way that enables cost analyses
  • to, at a later stage, include palliative treatment alternatives.

The objective of the National Quality Registry for Pancreatic and Periampullary Cancer is to create a nationwide registry of all patients with tumours in the pancreatic and periampullary area. The aim is to reduce surgery-related morbidity and achieve a mortality rate of less than 5 percent.

The registry includes six forms: Registration (A), Patient (B), Curative surgery (C), Postoperative Data (D), PAD (E), and Postoperative Follow-up (F).

For the patients in which the definitive treatment decision is “Curative surgery”, all six forms should be used, with the exception of resection “no”. For the majority of patients, in which the definitive treatment decision is “Non-curative treatment”, only the first form, Registration (A) should be used.

The registry contains information that is intended both to assist the individual clinician and to support local improvement initiatives. Developments in examination, treatment and treatment complications should be described. This data will be used for analysis and research, including on quality of life.

Population

The inclusion criteria for the registry is listed on the registry’s website. The National Quality Registry for Cancer is used to calculate the coverage rate for this registry. However, it must be noted that not all diagnoses can be matched against the Cancer Registry. For more information on this, please see the end of the appendix Pancreatic Inclusion Criteria.

Ages in the registry

All ages.

Total volume of registry

15 January 2014: 3,986 cases.

Volume over the past operating year

Diagnosis year 2012: 1,047 cases.

Coverage rate

Diagnosis year 2012: 76 percent.

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

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