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ID

44685

Description

Source: Swedish National Quality Registry for Leukaemia http://www.cancercentrum.se/samverkan/cancerdiagnoser/blod-lymfom-myelom/

Link

http://www.cancercentrum.se/samverkan/cancerdiagnoser/blod-lymfom-myelom/

Keywords

Versions (7)
  1. 10/14/17 10/14/17 - Martin Dugas
  2. 10/14/17 10/14/17 - Martin Dugas
  3. 10/21/17 10/21/17 - Martin Dugas
  4. 10/22/17 10/22/17 - Martin Dugas
  5. 10/22/17 10/22/17 - Martin Dugas
  6. 10/22/17 10/22/17 - Martin Dugas
  7. 9/27/21 9/27/21 -
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Regionala cancercentrum i samverkan

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September 27, 2021

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License

Creative Commons BY-NC 3.0
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    Swedish MDS registry

    English Swedish

    Myelodysplastic Syndrome - Registration

    2 forms  
    Registration form and Cancer notification
    Description

    Registration form and Cancer notification

    Alias
    UMLS CUI-1
    C1514821
    Reporting hospital / clinic
    Description

    Reporting hospital

    Data type

    text

    Alias
    UMLS CUI [1]
    C0019994
    Reporting doctor
    Description

    Reporting doctor

    Data type

    text

    Alias
    UMLS CUI [1]
    C0031831
    Rapporteringsdatum
    Description

    reporting date

    Data type

    date

    Alias
    UMLS CUI [1]
    C1302584
    Personnummer
    Description

    patient number

    Data type

    text

    Alias
    UMLS CUI [1]
    C1830427
    Patient Name
    Description

    Name

    Data type

    text

    Alias
    UMLS CUI [1]
    C1299487
    Lead times
    Description

    Lead times

    Referral written
    Description

    Referral written

    Data type

    date

    Alias
    UMLS CUI [1]
    C2735614
    Referral written
    Description

    Referral written

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2735614
    Referral received
    Description

    Referral received

    Data type

    date

    Alias
    UMLS CUI [1]
    C2735614
    Referral received
    Description

    Referral received

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2735614
    First patient visit to reporting unit
    Description

    First patient visit to reporting unit

    Data type

    date

    Alias
    UMLS CUI [1]
    C4287881
    Diagnosis
    Description

    Diagnosis

    Alias
    UMLS CUI-1
    C0011900
    Date of diagnosis
    Description

    If bone marrow tests provide a safe diagnosis, the date of diagnosis is the date on which the bone marrow test was taken. In other cases, the date when MDS was determined based on the inquiry / clinic

    Data type

    date

    Alias
    UMLS CUI [1]
    C2316983
    Diagnosis according to WHO classification
    Description

    Diagnosis WHO classification

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1301142
    Diagnosis comment
    Description

    Diagnosis comment

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0011900
    UMLS CUI [1,2]
    C0947611
    MDS category
    Description

    MDS category

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C3463824
    UMLS CUI [1,2]
    C0683312
    Biobank
    Description

    Biobank

    Alias
    UMLS CUI-1
    C2347027
    Samples to national biobank sent
    Description

    Samples to national biobank sent

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2347027
    UMLS CUI [1,2]
    C0370003
    UMLS CUI [1,3]
    C1515023
    Samples are also sent to another biobank
    Description

    Samples are also sent to another biobank

    Data type

    integer

    Which biobank
    Description

    Which biobank

    Data type

    text

    Alias
    UMLS CUI [1]
    C2347027
    PREVIOUS DISEASE
    Description

    PREVIOUS DISEASE

    Alias
    UMLS CUI-1
    C0683519
    History of cytostatics for malignant disease
    Description

    History of cytostatics for malignant disease

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0010858
    UMLS CUI [1,2]
    C0455471
    History of cytostatics for non-malignant disease
    Description

    History of cytostatics for non-malignant disease

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0010858
    UMLS CUI [1,2]
    C0262926
    UMLS CUI [1,3]
    C1518371
    undefined item
    Description

    undefined item

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C1522449
    UMLS CUI [1,2]
    C0262926
    History of hematological disease
    Description

    History of hematological disease

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0018939
    UMLS CUI [1,2]
    C0262926
    Previous hematological disease
    Description

    Previous hematological disease

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0018939
    UMLS CUI [1,2]
    C0205156
    Other previous hematological disease
    Description

    Other previous hematological disease

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0018939
    UMLS CUI [1,2]
    C0205156
    UMLS CUI [1,3]
    C0205394
    Diagnosis year and month of previous hematological disease
    Description

    Diagnosis year and month of previous hematological disease

    Data type

    partialDate

    Alias
    UMLS CUI [1,1]
    C0018939
    UMLS CUI [1,2]
    C2316983
    MDS perceived as
    Description

    MDS perceived as

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C3463824
    UMLS CUI [1,2]
    C0332307
    TRANSFUSIONS RESERVED BY DIAGNOSIS
    Description

    TRANSFUSIONS RESERVED BY DIAGNOSIS

    Alias
    UMLS CUI-1
    C1879316
    Erythrocyte transfusion
    Description

    Erythrocyte transfusion

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0086252
    Hemoglobin before first transfusion
    Description

    Hemoglobin before first transfusion

    Data type

    float

    Measurement units
    • g/dl
    Alias
    UMLS CUI [1,1]
    C0019046
    UMLS CUI [1,2]
    C1979588
    g/dl
    Thrombocyte transfusion
    Description

    Thrombocyte transfusion

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0086818
    BLOOD SAMPLES at diagnosis
    Description

    BLOOD SAMPLES at diagnosis

    Alias
    UMLS CUI-1
    C0018941
    UMLS CUI-2
    C0441942
    Hb
    Description

    Hb

    Data type

    float

    Measurement units
    • g/dl
    Alias
    UMLS CUI [1]
    C0019046
    g/dl
    MCV
    Description

    MCV

    Data type

    text

    Measurement units
    • fL
    Alias
    UMLS CUI [1]
    C1948043
    fL
    White blood cells
    Description

    White blood cells

    Data type

    float

    Measurement units
    • 10E9/L
    Alias
    UMLS CUI [1]
    C0023508
    10E9/L
    Neutrophil granulocytes
    Description

    Neutrophil granulocytes

    Data type

    float

    Measurement units
    • 10E9/L
    Alias
    UMLS CUI [1]
    C0018183
    10E9/L
    Neutrophil granulocytes
    Description

    Neutrophil granulocytes

    Data type

    float

    Measurement units
    • %
    Alias
    UMLS CUI [1]
    C0018183
    %
    Monocytes
    Description

    Monocytes

    Data type

    float

    Measurement units
    • 10E9/L
    Alias
    UMLS CUI [1]
    C0026473
    10E9/L
    Monocytes
    Description

    Monocytes

    Data type

    float

    Measurement units
    • %
    Alias
    UMLS CUI [1]
    C0026473
    %
    Blasts in blood
    Description

    Blasts in blood

    Data type

    float

    Measurement units
    • 10E9/L
    Alias
    UMLS CUI [1,1]
    C0368761
    UMLS CUI [1,2]
    C0229664
    10E9/L
    Blasts in blood
    Description

    Blasts in blood

    Data type

    float

    Measurement units
    • %
    Alias
    UMLS CUI [1,1]
    C0368761
    UMLS CUI [1,2]
    C0229664
    %
    Platelets
    Description

    Platelets

    Data type

    float

    Measurement units
    • 10E9/L
    Alias
    UMLS CUI [1]
    C0005821
    10E9/L
    LDH
    Description

    LDH

    Data type

    float

    Measurement units
    • µkat/l
    Alias
    UMLS CUI [1]
    C0202113
    µkat/l
    Erythropoetin
    Description

    Erythropoetin

    Data type

    float

    Measurement units
    • IE/L
    Alias
    UMLS CUI [1]
    C0014822
    IE/L
    Ferritin
    Description

    Ferritin

    Data type

    float

    Measurement units
    • µg/l
    Alias
    UMLS CUI [1]
    C0015879
    µg/l
    JAK2/V617F
    Description

    JAK2/V617F

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2210829
    BONE MARROW AT DIAGNOSIS
    Description

    BONE MARROW AT DIAGNOSIS

    Alias
    UMLS CUI-1
    C0005953
    UMLS CUI-2
    C0441942
    Bone marrow test performed
    Description

    Bone marrow test performed

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0005957
    UMLS CUI [1,2]
    C0884358
    Aspirate
    Description

    Aspirate

    Data type

    boolean

    Alias
    UMLS CUI [1]
    C0398523
    Diagnostic lab / Clinic
    Description

    Diagnostic lab / Clinic

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0022877
    UMLS CUI [1,2]
    C0442592
    Sample ID
    Description

    Sample ID

    Data type

    text

    Alias
    UMLS CUI [1]
    C1299222
    Sample year
    Description

    Sample year

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0370003
    UMLS CUI [1,2]
    C0439234
    Biopsy
    Description

    Biopsy

    Data type

    boolean

    Alias
    UMLS CUI [1]
    C0005558
    Diagnostic lab / Clinic
    Description

    Diagnostic lab / Clinic

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0022877
    UMLS CUI [1,2]
    C0442592
    Sample ID
    Description

    Sample ID

    Data type

    text

    Alias
    UMLS CUI [1]
    C1299222
    Sample year
    Description

    Sample year

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0370003
    UMLS CUI [1,2]
    C0439234
    Cell contents
    Description

    Cell contents

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0007634
    UMLS CUI [1,2]
    C0456205
    Percentage of blasts in bone marrow
    Description

    Percentage of blasts in bone marrow

    Data type

    float

    Measurement units
    • %
    Alias
    UMLS CUI [1,1]
    C1982687
    UMLS CUI [1,2]
    C0439165
    %
    Exact blast fraction bone marrow not indicated; no blast increase
    Description

    no blast increase

    Data type

    boolean

    Alias
    UMLS CUI [1,1]
    C1982687
    UMLS CUI [1,2]
    C1518422
    UMLS CUI [1,3]
    C0442805
    Proportion of blasts missing / cannot be assessed
    Description

    Proportion of blasts missing

    Data type

    boolean

    Alias
    UMLS CUI [1,1]
    C0587348
    UMLS CUI [1,2]
    C1705492
    Ring sideroblasts >=15% of erythropoietic cells
    Description

    Ring sideroblasts >=15% of erythropoietic cells

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0432608
    UMLS CUI [1,2]
    C0205217
    Fibrosis grade 2-3
    Description

    Fibrosis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0016059
    Cytogenetics at diagnosis (+/- 6 months from diagnosis)
    Description

    Cytogenetics at diagnosis (+/- 6 months from diagnosis)

    Alias
    UMLS CUI-1
    C0010802
    UMLS CUI-2
    C4071762
    Cytogenetik utförd
    Description

    Cytogenetics performed

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0010802
    UMLS CUI [1,2]
    C0884358
    Diagnostic lab / Clinic
    Description

    Diagnostic lab / Clinic

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0022877
    UMLS CUI [1,2]
    C0442592
    Sample ID
    Description

    Sample ID

    Data type

    text

    Alias
    UMLS CUI [1]
    C1299222
    Sample year
    Description

    Sample year

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0370003
    UMLS CUI [1,2]
    C0439234
    Result of cytogenetics
    Description

    Result of cytogenetics

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0010802
    Karyotype text
    Description

    Karyotype text

    Data type

    text

    Alias
    UMLS CUI [1]
    C1261273
    IPSS
    Description

    IPSS

    Alias
    UMLS CUI-1
    C2827405
    IPSS
    Description

    IPSS

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2827405
    IPSS-R
    Description

    IPSS-R

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2827405
    IPSS-R could not be calculated because one of the following was missing: Hb, neutrophils, platelets, bone marrow blast fraction or cytogenetics. Please check the entered data.
    Description

    IPSS-R could not be calculated

    Data type

    boolean

    Alias
    UMLS CUI [1]
    C0686905
    Diagnosis reason
    Description

    Diagnosis reason

    Alias
    UMLS CUI-1
    C0011900
    UMLS CUI-2
    C0566251
    Bone marrow tests provided safe diagnosis
    Description

    Bone marrow tests provided safe diagnosis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0005957
    WHO performance status
    Description

    WHO performance status

    Data type

    text

    Alias
    UMLS CUI [1]
    C1298650
    Treatment
    Description

    Treatment

    Alias
    UMLS CUI-1
    C0087111
    Treatment decision after diagnosis
    Description

    Treatment decision after diagnosis

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0087111
    UMLS CUI [1,2]
    C0679006
    Treatment start date
    Description

    Treatment start date

    Data type

    date

    Alias
    UMLS CUI [1]
    C3173309
    Not yet started treatment
    Description

    Not yet started treatment

    Data type

    boolean

    Alias
    UMLS CUI [1]
    C1444646
    Treatment according to
    Description

    Treatment according to

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0162791
    Study name
    Description

    Study name

    Data type

    text

    Alias
    UMLS CUI [1]
    C2348560
    Allogeneic stem cell transplantation
    Description

    Allogeneic stem cell transplantation

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2242529
    Follow-Up
    Description

    Follow-Up

    Alias
    UMLS CUI-1
    C1522577
    Hospital
    Description

    Hospital

    Data type

    text

    Alias
    UMLS CUI [1]
    C0019994
    Clinic
    Description

    Clinic

    Data type

    text

    Alias
    UMLS CUI [1]
    C0442592
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    Similar models

    Myelodysplastic Syndrome - Registration

    2 forms
    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    Alias
    Item Group
    Registration form and Cancer notification
    C1514821 (UMLS CUI-1)
    Reporting hospital
    Item
    Reporting hospital / clinic
    text
    C0019994 (UMLS CUI [1])
    Reporting doctor
    Item
    Reporting doctor
    text
    C0031831 (UMLS CUI [1])
    reporting date
    Item
    Rapporteringsdatum
    date
    C1302584 (UMLS CUI [1])
    patient number
    Item
    Personnummer
    text
    C1830427 (UMLS CUI [1])
    Name
    Item
    Patient Name
    text
    C1299487 (UMLS CUI [1])
    Item Group
    Lead times
    Referral written
    Item
    Referral written
    date
    C2735614 (UMLS CUI [1])
    Item
    Referral written
    integer
    C2735614 (UMLS CUI [1])
    undefined item
    Code List
    Referral written
    CL Item
    Not applicable (1)
    C1272460 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Data not available (2)
    C1883066 (UMLS CUI-1)
    (Comment:en)
    Referral received
    Item
    Referral received
    date
    C2735614 (UMLS CUI [1])
    Item
    Referral received
    integer
    C2735614 (UMLS CUI [1])
    undefined item
    Code List
    Referral received
    CL Item
    Not applicable (1)
    C1272460 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Data not available (2)
    C1883066 (UMLS CUI-1)
    (Comment:en)
    First patient visit to reporting unit
    Item
    First patient visit to reporting unit
    date
    C4287881 (UMLS CUI [1])
    Item Group
    Diagnosis
    C0011900 (UMLS CUI-1)
    Date of diagnosis
    Item
    Date of diagnosis
    date
    C2316983 (UMLS CUI [1])
    Item
    Diagnosis according to WHO classification
    integer
    C1301142 (UMLS CUI [1])
    undefined item
    Code List
    Diagnosis according to WHO classification
    CL Item
    RA (1)
    C0002893 (UMLS CUI-1)
    SNOMED - 99803 (Comment:sv)
    CL Item
    RN (2)
    C2826320 (UMLS CUI-1)
    SNOMED - 99803 (Comment:sv)
    CL Item
    RT (3)
    C2826321 (UMLS CUI-1)
    SNOMED - 99823 (Comment:sv)
    CL Item
    RCMD (4)
    C0796466 (UMLS CUI-1)
    SNOMED - 99853 (Comment:sv)
    CL Item
    RARS (5)
    C1264195 (UMLS CUI-1)
    SNOMED - 99823 (Comment:sv)
    CL Item
    RAEB-1 (6)
    C1318550 (UMLS CUI-1)
    SNOMED - 99833 (Comment:sv)
    CL Item
    RAEB-2 (7)
    C1318551 (UMLS CUI-1)
    SNOMED - 99833 (Comment:sv)
    CL Item
    5q-syndrom (8)
    C0740302 (UMLS CUI-1)
    SNOMED - 99863 (Comment:sv)
    CL Item
    MDS,UNS (9)
    C3463824 (UMLS CUI-1)
    C0205370 (UMLS CUI-2)
    SNOMED - 99893 (Comment:sv)
    CL Item
    CMML (10)
    C0023480 (UMLS CUI-1)
    SNOMED - 99453 (Comment:sv)
    CL Item
    Atypisk kronisk myeloid leukemi (11)
    C1292772 (UMLS CUI-1)
    SNOMED - 98763 (Comment:sv)
    CL Item
    Juvenil myelomonocytisk leukemi (12)
    C0349639 (UMLS CUI-1)
    SNOMED - 99463 (Comment:sv)
    CL Item
    Myelodysplastisk/myeloproliferativ neoplasi,oklassificerbar (13)
    C1301355 (UMLS CUI-1)
    C0205426 (UMLS CUI-2)
    SNOMED - 99753 (Comment:sv)
    CL Item
    RARS-T (14)
    C2826330 (UMLS CUI-1)
    SNOMED - 99823 (Comment:sv)
    Diagnosis comment
    Item
    Diagnosis comment
    text
    C0011900 (UMLS CUI [1,1])
    C0947611 (UMLS CUI [1,2])
    Item
    MDS category
    integer
    C3463824 (UMLS CUI [1,1])
    C0683312 (UMLS CUI [1,2])
    MDS category
    Code List
    MDS category
    CL Item
    Therapy-related (1)
    (Comment:sv)
    C0877578 (UMLS CUI-1)
    (Comment:en)
    CL Item
    De novo (2)
    (Comment:sv)
    C1515568 (UMLS CUI-1)
    (Comment:en)
    Item Group
    Biobank
    C2347027 (UMLS CUI-1)
    Item
    integer
    C2347027 (UMLS CUI [1,1])
    C0370003 (UMLS CUI [1,2])
    C1515023 (UMLS CUI [1,3])
    Samples to national biobank sent
    Code List
    Samples to national biobank sent
    CL Item
    No (1)
    (Comment:sv)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Scheduled but not yet completed (2)
    (Comment:sv)
    C0424237 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Patient rejects the biobank / cannot ask (3)
    (Comment:sv)
    C0420590 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (4)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Samples are also sent to another biobank
    Code List
    Samples are also sent to another biobank
    CL Item
    Ja (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Do not know (2)
    C1880386 (UMLS CUI-1)
    (Comment:en)
    Which biobank
    Item
    text
    C2347027 (UMLS CUI [1])
    Item Group
    PREVIOUS DISEASE
    C0683519 (UMLS CUI-1)
    Item
    integer
    C0010858 (UMLS CUI [1,1])
    C0455471 (UMLS CUI [1,2])
    history of cytostatics for malignant disease
    Code List
    History of cytostatics for malignant disease
    CL Item
    No (1)
    (Comment:sv)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Missing Data (3)
    (Comment:sv)
    C0814891 (UMLS CUI-1)
    (Comment:en)
    Item
    integer
    C0010858 (UMLS CUI [1,1])
    C0262926 (UMLS CUI [1,2])
    C1518371 (UMLS CUI [1,3])
    history of cytostatics for malignant disease
    Code List
    History of cytostatics for non-malignant disease
    CL Item
    No (1)
    (Comment:sv)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Missing Data (3)
    (Comment:sv)
    C0814891 (UMLS CUI-1)
    (Comment:en)
    Item
    integer
    C1522449 (UMLS CUI [1,1])
    C0262926 (UMLS CUI [1,2])
    history of cytostatics for malignant disease
    Code List
    undefined item
    CL Item
    No (1)
    (Comment:sv)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Missing Data (3)
    (Comment:sv)
    C0814891 (UMLS CUI-1)
    (Comment:en)
    Item
    integer
    C0018939 (UMLS CUI [1,1])
    C0262926 (UMLS CUI [1,2])
    history of cytostatics for malignant disease
    Code List
    History of hematological disease
    CL Item
    No (1)
    (Comment:sv)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Missing Data (3)
    (Comment:sv)
    C0814891 (UMLS CUI-1)
    (Comment:en)
    Item
    integer
    C0018939 (UMLS CUI [1,1])
    C0205156 (UMLS CUI [1,2])
    Previous hematological disease
    Code List
    Previous hematological disease
    CL Item
    ALL (1)
    (Comment:sv)
    C0023449 (UMLS CUI-1)
    (Comment:en)
    CL Item
    AML (2)
    (Comment:sv)
    C0023467 (UMLS CUI-1)
    (Comment:en)
    CL Item
    CML (3)
    (Comment:sv)
    C0023473 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Myeloma (4)
    (Comment:sv)
    C0026764 (UMLS CUI-1)
    (Comment:en)
    CL Item
    MPN (5)
    (Comment:sv)
    C0027022 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Lymphoma (6)
    (Comment:sv)
    C0024299 (UMLS CUI-1)
    (Comment:en)
    CL Item
    CLL (7)
    (Comment:sv)
    C0023434 (UMLS CUI-1)
    (Comment:en)
    CL Item
    MGUS (8)
    (Comment:sv)
    C0026470 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Other (9)
    (Comment:sv)
    C0205394 (UMLS CUI-1)
    (Comment:en)
    Other previous hematological disease
    Item
    text
    C0018939 (UMLS CUI [1,1])
    C0205156 (UMLS CUI [1,2])
    C0205394 (UMLS CUI [1,3])
    Diagnosis year and month of previous hematological disease
    Item
    partialDate
    C0018939 (UMLS CUI [1,1])
    C2316983 (UMLS CUI [1,2])
    Item
    integer
    C3463824 (UMLS CUI [1,1])
    C0332307 (UMLS CUI [1,2])
    MDS perceived as
    Code List
    MDS perceived as
    CL Item
    therapy-related (1)
    C2924519 (UMLS CUI-1)
    (Comment:en)
    CL Item
    De novo (2)
    C1515568 (UMLS CUI-1)
    (Comment:en)
    Item Group
    TRANSFUSIONS RESERVED BY DIAGNOSIS
    C1879316 (UMLS CUI-1)
    Item
    integer
    C0086252 (UMLS CUI [1])
    Erythrocyte transfusion
    Code List
    Erythrocyte transfusion
    CL Item
    Yes (1)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Diagnosis based mainly on blood samples and cytogenetics (2)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    C0010802 (UMLS CUI-3)
    (Comment:en)
    CL Item
    Diagnosis mainly based on blood samples only (3)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    (Comment:en)
    Hemoglobin before first transfusion
    Item
    float
    C0019046 (UMLS CUI [1,1])
    C1979588 (UMLS CUI [1,2])
    Item
    integer
    C0086818 (UMLS CUI [1])
    Erythrocyte transfusion
    Code List
    Thrombocyte transfusion
    CL Item
    Yes (1)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Diagnosis based mainly on blood samples and cytogenetics (2)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    C0010802 (UMLS CUI-3)
    (Comment:en)
    CL Item
    Diagnosis mainly based on blood samples only (3)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    (Comment:en)
    Item Group
    BLOOD SAMPLES at diagnosis
    C0018941 (UMLS CUI-1)
    C0441942 (UMLS CUI-2)
    Hb
    Item
    float
    C0019046 (UMLS CUI [1])
    MCV
    Item
    text
    C1948043 (UMLS CUI [1])
    White blood cells
    Item
    float
    C0023508 (UMLS CUI [1])
    Neutrophil granulocytes
    Item
    float
    C0018183 (UMLS CUI [1])
    Neutrophil granulocytes
    Item
    float
    C0018183 (UMLS CUI [1])
    Monocytes
    Item
    float
    C0026473 (UMLS CUI [1])
    Monocytes
    Item
    float
    C0026473 (UMLS CUI [1])
    Blasts in blood
    Item
    float
    C0368761 (UMLS CUI [1,1])
    C0229664 (UMLS CUI [1,2])
    Blasts in blood
    Item
    float
    C0368761 (UMLS CUI [1,1])
    C0229664 (UMLS CUI [1,2])
    Platelets
    Item
    float
    C0005821 (UMLS CUI [1])
    LDH
    Item
    float
    C0202113 (UMLS CUI [1])
    Erythropoetin
    Item
    float
    C0014822 (UMLS CUI [1])
    Ferritin
    Item
    float
    C0015879 (UMLS CUI [1])
    Item
    integer
    C2210829 (UMLS CUI [1])
    JAK2/V617F
    Code List
    JAK2/V617F
    CL Item
    Not mutated (1)
    C1883559 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Mutated (2)
    C0026882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Not performed (3)
    C0445106 (UMLS CUI-1)
    (Comment:en)
    Item Group
    BONE MARROW AT DIAGNOSIS
    C0005953 (UMLS CUI-1)
    C0441942 (UMLS CUI-2)
    Item
    integer
    C0005957 (UMLS CUI [1,1])
    C0884358 (UMLS CUI [1,2])
    Erythrocyte transfusion
    Code List
    Bone marrow test performed
    CL Item
    Yes (1)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Diagnosis based mainly on blood samples and cytogenetics (2)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    C0010802 (UMLS CUI-3)
    (Comment:en)
    CL Item
    Diagnosis mainly based on blood samples only (3)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    (Comment:en)
    Aspirate
    Item
    boolean
    C0398523 (UMLS CUI [1])
    Diagnostic lab / Clinic
    Item
    text
    C0022877 (UMLS CUI [1,1])
    C0442592 (UMLS CUI [1,2])
    Sample ID
    Item
    text
    C1299222 (UMLS CUI [1])
    Sample year
    Item
    integer
    C0370003 (UMLS CUI [1,1])
    C0439234 (UMLS CUI [1,2])
    Biopsy
    Item
    boolean
    C0005558 (UMLS CUI [1])
    Diagnostic lab / Clinic
    Item
    text
    C0022877 (UMLS CUI [1,1])
    C0442592 (UMLS CUI [1,2])
    Sample ID
    Item
    text
    C1299222 (UMLS CUI [1])
    Sample year
    Item
    integer
    C0370003 (UMLS CUI [1,1])
    C0439234 (UMLS CUI [1,2])
    Item
    integer
    C0007634 (UMLS CUI [1,1])
    C0456205 (UMLS CUI [1,2])
    Cell contents
    Code List
    Cell contents
    CL Item
    100% (1)
    C3817553 (UMLS CUI-1)
    (Comment:en)
    CL Item
    90% (2)
    (Comment:en)
    CL Item
    80% (3)
    (Comment:en)
    CL Item
    70% (4)
    (Comment:en)
    CL Item
    60% (5)
    (Comment:en)
    CL Item
    50% (6)
    C3842586 (UMLS CUI-1)
    (Comment:en)
    CL Item
    40% (7)
    (Comment:en)
    CL Item
    30% (8)
    (Comment:en)
    CL Item
    20% (9)
    (Comment:en)
    CL Item
    10% (10)
    (Comment:en)
    CL Item
    Cell content missing (11)
    (Comment:en)
    CL Item
    Exact cell content not specified (12)
    (Comment:en)
    CL Item
    Lower cell contents than normal (13)
    (Comment:en)
    CL Item
    Normal cell contents (14)
    (Comment:en)
    CL Item
    Higher cell contents than normal (15)
    (Comment:en)
    Percentage of blasts in bone marrow
    Item
    float
    C1982687 (UMLS CUI [1,1])
    C0439165 (UMLS CUI [1,2])
    no blast increase
    Item
    Exact blast fraction bone marrow not indicated; no blast increase
    boolean
    C1982687 (UMLS CUI [1,1])
    C1518422 (UMLS CUI [1,2])
    C0442805 (UMLS CUI [1,3])
    Proportion of blasts missing
    Item
    Proportion of blasts missing / cannot be assessed
    boolean
    C0587348 (UMLS CUI [1,1])
    C1705492 (UMLS CUI [1,2])
    Item
    integer
    C0432608 (UMLS CUI [1,1])
    C0205217 (UMLS CUI [1,2])
    Ring sideroblasts >=15% of erythropoietic cells
    Code List
    Ring sideroblasts >=15% of erythropoietic cells
    CL Item
    No (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Not assessed / missing (3)
    C3846720 (UMLS CUI-1)
    C1705492 (UMLS CUI-2)
    (Comment:en)
    Item
    Fibrosis grade 2-3
    integer
    C0016059 (UMLS CUI [1])
    Ring sideroblasts >=15% of erythropoietic cells
    Code List
    Fibrosis grade 2-3
    CL Item
    No (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (2)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Not assessed / missing (3)
    C3846720 (UMLS CUI-1)
    C1705492 (UMLS CUI-2)
    (Comment:en)
    Item Group
    Cytogenetics at diagnosis (+/- 6 months from diagnosis)
    C0010802 (UMLS CUI-1)
    C4071762 (UMLS CUI-2)
    Item
    Cytogenetik utförd
    integer
    C0010802 (UMLS CUI [1,1])
    C0884358 (UMLS CUI [1,2])
    Cytogenetics performed
    Code List
    Cytogenetik utförd
    CL Item
    Nej (1)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Ja (2)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Ja men ej bedömbar (3)
    C1707258 (UMLS CUI-1)
    (Comment:en)
    Diagnostic lab / Clinic
    Item
    text
    C0022877 (UMLS CUI [1,1])
    C0442592 (UMLS CUI [1,2])
    Sample ID
    Item
    text
    C1299222 (UMLS CUI [1])
    Sample year
    Item
    integer
    C0370003 (UMLS CUI [1,1])
    C0439234 (UMLS CUI [1,2])
    Item
    Result of cytogenetics
    integer
    C0010802 (UMLS CUI [1])
    Result of cytogenetics
    Code List
    Result of cytogenetics
    CL Item
    Normal (1)
    C0205307 (UMLS CUI-1)
    (Comment:en)
    CL Item
    -Y (2)
    (Comment:en)
    CL Item
    Inv(3),t(3q),del(3q) (3)
    (Comment:en)
    CL Item
    del(5q) (4)
    C1521461 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Del(7q) (5)
    C1517990 (UMLS CUI-1)
    (Comment:en)
    CL Item
    -7 (6)
    (Comment:en)
    CL Item
    +8 (7)
    (Comment:en)
    CL Item
    Del(11q) (8)
    (Comment:en)
    CL Item
    del(12p) (9)
    (Comment:en)
    CL Item
    i(17q) (10)
    (Comment:en)
    CL Item
    +19 (11)
    (Comment:sv)
    (Comment:en)
    CL Item
    del(20q) (12)
    (Comment:sv)
    (Comment:en)
    CL Item
    1 deviation (not listed above) (13)
    (Comment:sv)
    (Comment:en)
    CL Item
    2 deviations including del(5q) (14)
    (Comment:sv)
    (Comment:en)
    CL Item
    2 deviations including -7 or del(7q) (15)
    (Comment:sv)
    (Comment:en)
    CL Item
    2 other deviations (16)
    (Comment:sv)
    (Comment:en)
    CL Item
    Complex with 3 deviations (17)
    (Comment:sv)
    (Comment:en)
    CL Item
    Complex with >3 deviations (18)
    (Comment:sv)
    (Comment:en)
    Karyotype text
    Item
    text
    C1261273 (UMLS CUI [1])
    Item Group
    C2827405 (UMLS CUI-1)
    Item
    integer
    C2827405 (UMLS CUI [1])
    IPSS
    Code List
    IPSS
    CL Item
    Low (1)
    C0205251 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Intermediate 1 (2)
    C3640764 (UMLS CUI-1)
    C0205447 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Intermediate 2 (3)
    C3640764 (UMLS CUI-1)
    C0205448 (UMLS CUI-2)
    (Comment:en)
    CL Item
    High (4)
    C0205250 (UMLS CUI-1)
    (Comment:en)
    Item
    integer
    C2827405 (UMLS CUI [1])
    IPSS-R
    Code List
    IPSS-R
    CL Item
    Very low (1)
    C0442811 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Low (2)
    C0205251 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Intermediate (3)
    C0205103 (UMLS CUI-1)
    (Comment:en)
    CL Item
    High (4)
    C0205250 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Very high (5)
    C0442804 (UMLS CUI-1)
    (Comment:en)
    IPSS-R could not be calculated
    Item
    IPSS-R could not be calculated because one of the following was missing: Hb, neutrophils, platelets, bone marrow blast fraction or cytogenetics. Please check the entered data.
    boolean
    C0686905 (UMLS CUI [1])
    Item Group
    C0011900 (UMLS CUI-1)
    C0566251 (UMLS CUI-2)
    Item
    Bone marrow tests provided safe diagnosis
    integer
    C0005957 (UMLS CUI [1])
    Erythrocyte transfusion
    Code List
    Bone marrow tests provided safe diagnosis
    CL Item
    Yes (1)
    (Comment:sv)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Diagnosis based mainly on blood samples and cytogenetics (2)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    C0010802 (UMLS CUI-3)
    (Comment:en)
    CL Item
    Diagnosis mainly based on blood samples only (3)
    (Comment:sv)
    C0011900 (UMLS CUI-1)
    C0178913 (UMLS CUI-2)
    (Comment:en)
    Item
    text
    C1298650 (UMLS CUI [1])
    WHO performance status
    Code List
    WHO performance status
    CL Item
    Completes all normal activity without limitation (0)
    (Comment:sv)
    C1298651 (UMLS CUI-1)
    C0919414 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Does easier work, but not physically demanding activity but is up and running for easier work. (1)
    (Comment:sv)
    C1298651 (UMLS CUI-1)
    C0205447 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Unable to work, but up and running more than 50% of the day (2)
    (Comment:sv)
    C1298651 (UMLS CUI-1)
    C0205448 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Can take care of himself/herself only in part. Is bound to bed or chair more than 50% of the day (3)
    (Comment:sv)
    C1298651 (UMLS CUI-1)
    C0205449 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Cannot take care of himself/herself. Is bound to bed or chair (4)
    (Comment:sv)
    C1298651 (UMLS CUI-1)
    C0205450 (UMLS CUI-2)
    (Comment:en)
    CL Item
    unknown (NA)
    C1880386 (UMLS CUI-1)
    (Comment:en)
    Item Group
    C0087111 (UMLS CUI-1)
    Item
    integer
    C0087111 (UMLS CUI [1,1])
    C0679006 (UMLS CUI [1,2])
    Treatment decision after diagnosis
    Code List
    Treatment decision after diagnosis
    CL Item
    Induction therapy (1)
    (Comment:en)
    C3179010 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Azacytidine (2)
    (Comment:en)
    C0004475 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Hydroxyurea (3)
    (Comment:en)
    C0020402 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Erythropoetin (4)
    (Comment:en)
    C0014822 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Immunsuppressive therapy (5)
    (Comment:en)
    C0021081 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Lenalidomide (6)
    (Comment:en)
    C1144149 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Chelation therapy (7)
    (Comment:en)
    C0007975 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Annat (8)
    (Comment:en)
    C0205394 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    Only supportive treatment (9)
    (Comment:en)
    C0344211 (UMLS CUI-1)
    (Comment:sv)
    CL Item
    No treatment indication (10)
    (Comment:en)
    C0521090 (UMLS CUI-1)
    C0087111 (UMLS CUI-2)
    (Comment:sv)
    Treatment start date
    Item
    date
    C3173309 (UMLS CUI [1])
    Not yet started treatment
    Item
    boolean
    C1444646 (UMLS CUI [1])
    Item
    integer
    C0162791 (UMLS CUI [1])
    Treatment according to
    Code List
    Treatment according to
    CL Item
     (1)
    C0162791 (UMLS CUI-1)
    (Comment:sv)
    CL Item
     (2)
    C2348563 (UMLS CUI-1)
    (Comment:sv)
    Study name
    Item
    text
    C2348560 (UMLS CUI [1])
    Item
    integer
    C2242529 (UMLS CUI [1])
    Allogeneic stem cell transplantation
    Code List
    Allogeneic stem cell transplantation
    CL Item
    planned (1)
    C1301732 (UMLS CUI-1)
    (Comment:en)
    CL Item
    May be relevant (2)
    C3844350 (UMLS CUI-1)
    C2347946 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Can not be applied (3)
    C1272460 (UMLS CUI-1)
    (Comment:en)
    Item Group
    C1522577 (UMLS CUI-1)
    Hospital
    Item
    text
    C0019994 (UMLS CUI [1])
    Clinic
    Item
    text
    C0442592 (UMLS CUI [1])
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