Myelodysplastic Syndrome - Registration

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

Similar models

Myelodysplastic Syndrome - Registration

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])
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])
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])
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])
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])
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)
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])