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Review
. 2016 Oct 25:8:567-572.
doi: 10.2147/CLEP.S99462. eCollection 2016.

The Danish National Chronic Myeloid Neoplasia Registry

Marie Bak  1 , Else Helene Ibfelt  2 , Thomas Stauffer Larsen  3 , Dorthe Rønnov-Jessen  4 , Niels Pallisgaard  5 , Ann Madelung  6 , Lene Udby  1 , Hans Carl Hasselbalch  1 , Ole Weis Bjerrum  7 , Christen Lykkegaard Andersen  8
Affiliations
Review

The Danish National Chronic Myeloid Neoplasia Registry

Marie Bak et al. Clin Epidemiol. .

Abstract

Aim: The Danish National Chronic Myeloid Neoplasia Registry (DCMR) is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital departmental levels and serve as a platform for research.

Study population: The DCMR has nationwide coverage and contains information on patients diagnosed at hematology departments from January 2010 onward, including patients with essential thrombocythemia, polycythemia vera, myelofibrosis, unclassifiable myeloproliferative neoplasms, chronic myelomonocytic leukemia, and chronic myeloid leukemia.

Main variables: Data are collected using standardized registration forms (so far up to four forms per patient), which are consecutively filled out online at time of diagnosis, after 2-year and 5-year follow-ups, and at end of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival - disease-specific variables - as well as variables that are identical for all chronic myeloid malignancies.

Descriptive data: By the end of 2014, the DCMR contained data on 2,690 patients with an inclusion rate of ∼500 patients each year. Since the registry was established, annual reports have shown consistently high national coverage and data completeness, ≥90% and ≥88%, respectively.

Conclusion: The DCMR is a national database used for monitoring the quality of patient care in patients with chronic myeloid malignancies, but until validation has been conducted, the data must be used with caution. However, the DCMR is a valuable data source accessible to clinicians and researchers.

Keywords: database; epidemiology; health care quality assurance; myeloproliferative disorders; outcome assessment; research; treatment.

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Conflict of interest statement

The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
The Danish National Chronic Myeloid Neoplasia Registry algorithm. Note: Data are entered at predefined intervals for each patient (at time of diagnosis, after 2-year and 5-year follow-ups, and at end of follow-up). Abbreviations: CML, chronic myeloid leukemia; CMML, chronic myelomonocytic leukemia; CRS, The Danish Civil Registration System; DCMR, The Danish National Chronic Myeloid Neoplasia Registry; DNPR, The Danish National Patient Registry; ET, essential thrombocythemia; MF, myelofibrosis; MPN-U, unclassifiable myeloproliferative neoplasm; PV, polycythemia vera.
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