Abstract P6-08-27: Development of a clinical registry for breast cancer in Norway
Authors: Hartmann-Johnsen OJ , Schlichting E , Kåresen R , Nygård JF 
Published: February 2018

Background: Increased focus on Quality Indicators and Clinical quality registries shows higher compliance to recommended therapy and increased survival. Furthermore, a clinical registry offers an ideal infrastructure for enrolling and following patients in randomized clinical trials. To achieve EUSOMA certification of a Breast Cancer Unit, list of 14 Quality Indicators selected for certification purposes are mandatory. The Norwegian Breast Cancer Group (NBCG) wants a tool for evaluating compliance and results of recommended treatment in breast cancer care on a regular basis utilising the Norwegian Clinical Registry for Breast Cancer run by the Cancer Registry of Norway. The main objective of this study is to describe the development and practise of the Norwegian Clinical Registry for Breast Cancer and to facilitate EUSOMA approval for breast cancer unites on a national level. Report can be given for every institution treating breast cancer in Norway.

Methods: To provide researchers with high quality cancer data as well as for the purpose of national cancer statistics, the Cancer Registry of Norway (CRN) employs a cancer registry system to 1) longitudinal collection of data from all patients from all medical entities that diagnosis and/or treat cancer patients (e.g., pathology laboratories and clinic hospitals) in Norway; 2) validate the correctness of collected data, and 3) assemble the validated cancer data as cancer cases.

Results: All hospitals currently operating breast cancer patients provides data for the EUSOMA criteria. Data from pathology and surgery are of high quality, However, data from oncologic departments are lacking, but improving. We are however confident that these data will be reported regularly within the next years. We can now provide 8 of 14 mandatory Quality Indicators.

Selection of quality indicators used in the annual report for breast cancer in Norway. From year 2016 covering the whole country. 8 of 14 Eusoma Mandatory Quality Indicators for Breast Center Certification are fulfilledCoverage of patients reported to the breast cancer registry99.9% Proportion with reports on diagnosis (TNM stage)90% Proportion with reports on surgical treatment89% Proportion with reports regarding radiology treatment37% 5-years relative survival. Estimated with patients who lived in 2014-201690.4% Proportion with preoperativ diagnosis confirmed with bipsy or cytology98%EusomaProportion with DCIS where grading is reported98.9%EusomaProportion of patients with invasive cancer and axillary clearance with at last 10 lymph nodes examined77%EusomaProportion of patients with invasive cancer not grater than 3 cm who underwent BCT (Neoadjuvant excluded)81.5%EusomaProportion of patients with non invasive breast cancer not grater than 2 cm who underwent BCT90.6%EusomaProportion of patients with DCIS who do not undergo axillary clearance100%EusomaProportion of patients (DCIS) who received just one operation95.5%EusomaProportion of invasive breast cancer patients with pN0 who do not undergo axillary clearance98.2%Eusoma

Conclusion: The NBCR promises to deliver all 14 EUSOMA criteria to all hospitals in Norway on a regular annual basis, thus facilitating EUSOMA approval for breast cancer unites.

Citation Format: Hartmann-Johnsen OJ, Schlichting E, Kåresen R, Nygård JF. Development of a clinical registry for breast cancer in Norway [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-08-27.