Relevant clinical and phenotypic data from hospital admissions and outpatient consultations can be retrieved from the hospital registry or directly from the hospital medical records (Hospital Electronic Medical Records (EMRs)). This includes ICD-10 codes for all diagnoses, procedure codes and hospital admission and discharge dates. Using EMRs, rich clinical phenotype data can be retrieved from data generated as a part of clinical care from 2000 to present day. This includes information from all consultations, laboratory data and imaging. Information of treatment, responses, time to response, progression free survival, time to next treatment will usually be available or can be calculated. Responses and MRD are based on M- protein, immunofixation and flow cytometry. Routine skeletal imaging was based on x-ray onto 2014 and thereafter changed to low dose CT. MRI has been used on clinical indication.
From 2017, clinical phenotypic information at the point of diagnosis, including primary treatment, is registered and available in a data repository (BIOBYTE®).
From 2018, The Cancer Registry of Norway will start registration of detailed relevant information of all new cases of multiple myeloma. The registration will include myeloma subtypes, date of diagnosis, relapses and death, laboratory values, imaging and cytogenetics results, and overview of treatment.
Approvals and consent is in place to retrieve and link data also to a range of nationwide and mandatory registries such as the Cancer Registry of Norway, The Norwegian Cause of Death Registry (NCoDR), The Norwegian Prescription Database (NorPD) and The Norwegian Patient Registry (NPR).