The Danish National Chronic Myeloid Neoplasia Registry

Figures & data

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.

Table 1 Main variables recorded on standardized online registration forms in the Danish National Chronic Myeloid Neoplasia Registry

Registration form (time of registration)	Main variables
	Nondisease-specific variables	Disease-specific variables
Registration form (submitted at time of diagnosis)	Name and civil registration number Diagnosis according to WHO 2008/ICD-10 Date of diagnosis Prior hematological disease (>3 months’ duration) B-symptoms: weight loss, night sweat, and itching Spleen enlargement (if yes, then clinical or image verified) Laboratory values Biological material for a biobank	ET, PV, MF, MPN-U  Prior other cancer (solid/nonsolid)  Inherited MPN predisposition  Prior thrombosis (specified, if present)  Bleedings  Musculoskeletal symptoms (related to MPN)  Microvascular symptoms (specified, if present)  Cardiovascular risk factors  Cytogenetic and molecular biological assessments:   JAK2V617F, JAK2 exon 12, MPL, CALRa, ASXL1a   If present, JAK2V617F, MPL, and CALR allele burdena
		CML  BCR-ABL1 expression level (% IS)a  Chromosomal abnormalities, besides t(9;22)  Disease phase: chronic, accelerated, blast crisis
		CMML  Cytogenetic and molecular biological assessment (r-IPSS)
2-Year Registration Form (submitted 2 years after diagnosis)	Date of registration Spleen enlargement or progressiona Cytogenetic and molecular biological assessment Treatment (within the first 2 years) Participation in clinical research protocol Progression of disease	ET, PV, MF, MPN-U  Vascular events since diagnosisa (specified if present)  If present, JAK2V617F, MPL, and CALR allele burdena
		CML  Monitoring with qPCR or dPCR  BCR-ABL1 expression level (% IS)a  Chromosomal abnormalities besides t(9;22)a  Mutation status in patients with treatment resistancea  Treatment responsea  Vascular events since diagnosisa (specified if present)
5-Year Registration Form (submitted 5 years after diagnosis)	Transplantation: date and type of transplantation Date of registration Spleen enlargement or progressiona Cytogenetic and molecular biological assessment Treatment Participation in clinical research protocol Progression of disease Transplantation: date and type of transplantation	ET, PV, MF, MPN-U  Vascular events since diagnosisa (specified if present)  If present, JAK2V617F, MPL, and CALR allele burdena
		CML  Monitoring with qPCR or dPCR  BCR-ABL1 expression level (% IS)a  Chromosomal abnormalities besides t(9;22)a  Mutation status in patients with treatment resistancea  Treatment responsea  Vascular events since diagnosisa (specified if present)
Follow-up Form (submitted at end of follow-up)	Vital status Date of follow-up or date of death Place of death

Note:

a Introduced in 2015.

Abbreviations: ASXL1, the additional sex combs-like gene; BCR-ABL1, BCR-ABL1 fusion gene (Philadelphia chromosome); CALR, calreticulin; CML, chronic myeloid leukemia; CMML, chronic myelomonocytic leukemia; dPCR, digital polymerase chain reaction; ET, essential thrombocythemia; ICD, International Classification of Diseases; IS, International Scale; JAK2V617F, janus kinase2V617F mutation; MF, myelofibrosis; MPL, myeloproliferative leukemia protein (thrombopoietin receptor); MPN, myeloproliferative neoplasm; MPN-U, unclassifiable myeloproliferative neoplasms; PV, polycythemia vera; qPCR, quantitative polymerase chain reaction; WHO, World Health Organization.

Table 2 Quality indicators in the Danish National Chronic Myeloid Neoplasia Registry

National quality indicators in the DCMR (%)
Year	2014	2013	2012
Database-related indicators (quality of the database)
Database coveragea	90	97	98
Data completeness (submitted	88	96	99
2-Year Registration Forms)
Patient-related indicators (quality of patient-related outcomes)
30-day mortality	0.5	0.5	0.6
180-day mortality	3.7	3.9	4.5
Cytogenetic or molecular biological diagnostics performed	97	97	98
Patients included in a clinical protocol	14	2	3
Year of registration	2013–2014b	2011–2012b
1-year survival	92	92	–
	2011–2014b	–	–
3-year survival	80	–	–

Notes: National quality indicator results (calculated for the years 2012–2014). Each indicator is calculated as percentage of patients that meet the indicator criteria.

a Coverage of the DCMR, is calculated annually as patients within the registry, divided by all patients with chronic myeloid malignancies in hematology departments in Denmark.

b Patients with registration in the database over the years are pooled.

Abbreviation: DCMR, Danish National Chronic Myeloid Neoplasia Registry.