Phenotypic data
The PBCB has consent in place that allows the retrieval of a wide range of phenotypic and clinical data that is highly relevant for breast cancer research.
Relevant clinical information is retrieved directly from the hospital electronic medical records (EMRs) for each visit and is stored in a fire wall protected database. In total, 94 different variables are collected in various categories, such as diagnosis, staging, histological grade, hormone status (ER/PR), HER-2 status, surgery, chemotherapy, radiation, endocrine therapy, patient status (metastasis, medicines and co-malignancies).The patient-reported outcome measures (PROM) is self-reported data that includes information on other co-morbidities, treatment given, health problems last 30 days, smoking, co-medications, socioeconomic status, family history, information about menarche and last pregnancy, diet habits and muscle and joint pain.
The patient-reported outcome measures (PROM) is self-reported data that includes information on other co-morbidities, treatment given, health problems last 30 days, smoking, co-medications, socioeconomic status, family history, infomation about menarche and last pregnancy, diet habits and muscle and joint pain.
Moreover, the following PROM-instruments are reported annually and includes:
- EORTC-QLQ-C30, “Quality of life of cancer patients”
- EORTC-QLQ-BR23 “Breast cancer-specific quality of life questionnaire”
- Mishel uncertainty in illness scale, MUI
- Hospital Anxiety and Despression, HAD
- FACT-F: Functional Assessment of Chronic Illness Therapy-Fatigue
- FACT-ES: Functional Assessment of Cancer Therapy-Endocrine Subscale
- FACT-B: Functional Assessment of Cancer Therapy – Breast
The following rating scales are administered during the visits:
- FSS : Fatigue Severity Scale
- fVAS: Fatigue Visual Analog Scale
Subjects are also asked question of side-effects on tamoxifen and aromatase inhibitors at the visits.
In addition, approvals and consent is in place to retrieve data from a range of nationwide and mandatory registries, such as the Cancer Registry of Norway, The Medical Birth Registry, The Norwegian Cause of Death Registry (NCoDR), The Norwegian Prescription Database (NorPD), The Norwegian Patient Registry (NPR) and more.