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AIM: The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. STUDY POPULATION: All newly diagnosed patients with multiple myeloma (MM), smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. MAIN VARIABLES: The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. DESCRIPTIVE DATA: Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients with solitary plasmacytomas were registered. Registration completeness of new patients is ~100%. A data validation study performed in 2013-2014 by the Danish Myeloma Study Group showed >95% data correctness. CONCLUSION: The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.
RESUMO
BACKGROUND: Treating cardiac arrest is linked to the mutual performance of several health-care individuals' task coordination. Non-technical skills, including communication, leadership and team interaction, could improve sequencing the tasks in the cardiac arrest algorithm. Non-technical skills have been a part of crew resource management training, created to improve safety in aviation. This study aimed, first, to establish crew resource management and non-technical skill-based learning objectives and behavioural markers for the performance of multi-professional resuscitation teams; second, to develop a checklist and to evaluate the validity and reliability of the checklist; and, finally, to develop a simulation-based course including the checklist on behavioural markers, as a tool for learning and assessment. METHOD: A seven-step procedure was used. Findings from interviews with Advanced Life Support instructors and analysis of critical incidents were used to create learning objectives, assessment tools and course curriculum. Reliability and validity were tested by assessing digital versatile disc (DVD)-recorded simulated cardiac arrests. RESULTS: A checklist with 22 behavioural markers based on nine learning objectives was developed and embedded in an 8-h full-scale simulation course. Inter-rater reliability of the checklist (intra-class correlation) was 0.9. Concurrent validity (intra-class correlation) was 0.93. Rate of agreement (0.58-0.91) and kappa values (0.03-0.82) on single items varied. CONCLUSION: A full-scale simulation course and a checklist with 22 behavioural markers were developed. Good inter-rater reliability and concurrent validity of the checklist were demonstrated. Single items on the checklist need refinement to improve accuracy.