ID

16604

Description

ODM form derived from EBMT Haemoglobinopathy please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

Link

http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

Keywords

Versions (1)
  1. 7/26/16 7/26/16 -
Uploaded on

July 26, 2016

DOI

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License

Creative Commons BY-NC 3.0
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EBMT Haemoglobinopathy follow up form

English

EBMT Haemoglobinopathy follow up form

1 forms  
FOLLOW UP Haemoglobinopathy
Description

FOLLOW UP Haemoglobinopathy

Unique Identification Code (UIC) (if known)
Description

Unique Identification Code (UIC)

Data type

text

Alias
UMLS CUI [1]
C2348585
Date of this report
Description

Date of this report

Data type

date

Alias
UMLS CUI [1]
C1302584
Patient following national / international study / trial
Description

Patient in Trial

Data type

integer

Alias
UMLS CUI [1]
C1997894
Name of study / trial
Description

Name of study

Data type

text

Alias
UMLS CUI [1]
C0008976
Hospital Unique Patient Number
Description

Hospital Unique Patient Number

Data type

text

Alias
UMLS CUI [1]
C2348585
First name(s)_surname(s)
Description

Initials

Data type

text

Alias
UMLS CUI [1]
C2986440
Date of Birth
Description

Date of Birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Date of last HSCT for this patient
Description

Date of last HSCT for this patient

Data type

date

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0011008
DATE OF LAST CONTACT OR DEATH
Description

PATIENT LAST SEEN

Data type

date

Alias
UMLS CUI [1]
C0805839
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Description

GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT

Acute Graft versus Host Disease (aGvHD) - Maximum grade
Description

aGvHD Grading

Data type

integer

Alias
UMLS CUI [1,1]
C0441799
UMLS CUI [1,2]
C0856825
If present GvHD, Maximum grade
Description

Maximum grade

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C0441800
Reason Maximum grade
Description

Reason Maximum grade

Data type

integer

Alias
UMLS CUI [1,1]
C0441800
UMLS CUI [1,2]
C0392360
Date onset of this episode (if new or recurrent)
Description

Date onset of this episode

Data type

date

Measurement units
  • yyyy/mm/dd
Alias
UMLS CUI [1]
C0574845
yyyy/mm/dd
Date onset of this episode
Description

Date onset of this episode

Data type

integer

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0011008
aGvHD Stage Skin
Description

aGvHD Stage Skin

Data type

integer

Alias
UMLS CUI [1]
C1739372
aGvHD Stage liver
Description

aGvHD Stage liver

Data type

integer

Alias
UMLS CUI [1]
C1739104
aGvHD stage gut
Description

aGvHD stage gut

Data type

integer

Alias
UMLS CUI [1]
C1737219
Resolution
Description

aGvHD Resolution

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1514893
aGvHD Date of resolutions
Description

aGvHD Date of resolutions

Data type

date

Presence of cGvHD
Description

Chronic Graft versus Host Disease (cGvHD)

Data type

text

Alias
UMLS CUI [1]
C0867389
Date of onset
Description

Date of onset

Data type

date

Alias
UMLS CUI [1]
C0574845
cGvHD grade
Description

cGvHD grade

Data type

integer

Alias
UMLS CUI [1,1]
C0867389
UMLS CUI [1,2]
C0441800
Organs affected
Description

Organs affected

Data type

integer

Alias
UMLS CUI [1]
C0449642
If other organs affected, please specify
Description

Organs affected

Data type

integer

Alias
UMLS CUI [1]
C0178784
cGvHD Resolved: Date of resolution
Description

cGvHD Resolved: Date of resolution

Data type

date

Alias
UMLS CUI [1,1]
C0867389
UMLS CUI [1,2]
C2985858
OTHER COMPLICATIONS SINCE LAST REPORT
Description

OTHER COMPLICATIONS SINCE LAST REPORT

INFECTION RELATED COMPLICATIONS
Description

INFECTION RELATED COMPLICATIONS

Data type

integer

Alias
UMLS CUI [1,1]
C0009450
UMLS CUI [1,2]
C0009566
Bacteremia / fungemia / viremia / parasites
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.

Data type

integer

Alias
UMLS CUI [1,1]
C0004610
UMLS CUI [1,2]
C0085082
UMLS CUI [1,3]
C0042749
UMLS CUI [1,4]
C0030498
Septic shock
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.

Data type

integer

Alias
UMLS CUI [1]
C0036983
ARDS
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.

Data type

integer

Alias
UMLS CUI [1]
C0035222
Multiorgan failure due to infection
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

integer

Alias
UMLS CUI [1]
C0026766
Pneumonia
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

integer

Alias
UMLS CUI [1]
C0032285
Hepatitis
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.

Data type

integer

Alias
UMLS CUI [1]
C0019158
CNS infection
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.

Data type

integer

Alias
UMLS CUI [1]
C0007684
Gut infection
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

integer

Alias
UMLS CUI [1]
C0178238
Skin infection
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

text

Alias
UMLS CUI [1]
C0037278
Cystitis
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

text

Alias
UMLS CUI [1]
C0010692
Retinitis
Description

Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary

Data type

text

Alias
UMLS CUI [1]
C0035333
Other pathogen specified
Description

Other pathogen specified

Data type

integer

Alias
UMLS CUI [1]
C0450254
NON INFECTION RELATED COMPLICATIONS
Description

NON INFECTION RELATED COMPLICATIONS

Data type

integer

Alias
UMLS CUI [1]
C0009566
Idiopathic pneumonia syndrome
Description

Idiopathic pneumonia syndrome

Data type

integer

Alias
UMLS CUI [1]
C1504431
VOD
Description

VOD

Data type

integer

Alias
UMLS CUI [1]
C0948441
Cataract
Description

Cataract

Data type

text

Alias
UMLS CUI [1]
C0086543
Haemorrhagic cystitis, non infectious
Description

Haemorrhagic cystitis, non infectious

Data type

text

Alias
UMLS CUI [1]
C0085692
Specify: ARDS, non infectious
Description

ARDS, non infectious

Data type

text

Alias
UMLS CUI [1]
C0035222
Multiorgan failure, non infectious
Description

Multiorgan failure, non infectious

Data type

integer

Alias
UMLS CUI [1]
C0026766
HSCT-associated microangiopathy
Description

HSCT-associated microangiopathy

Data type

integer

Alias
UMLS CUI [1]
C0155765
Renal failure requiring dialysis
Description

Renal failure requiring dialysis

Data type

text

Alias
UMLS CUI [1]
C0035078
Haemolytic anaemia due to blood group
Description

Haemolytic anaemia due to blood group

Data type

integer

Alias
UMLS CUI [1]
C0002878
Aseptic bone necrosis
Description

Aseptic bone necrosis

Data type

text

Alias
UMLS CUI [1]
C0158452
Other type of NON INFECTION RELATED COMPLICATIONS, please specify
Description

Other type of NON INFECTION RELATED COMPLICATIONS

Data type

text

Idiopathic pneumonia syndrome
Description

Idiopathic pneumonia syndrome

Data type

date

Alias
UMLS CUI [1,1]
C1504431
UMLS CUI [1,2]
C0011008
Graft loss
Description

GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM

Data type

text

Alias
UMLS CUI [1]
C0877042
Overall chimaerism
Description

Overall chimaerism

Data type

text

Alias
UMLS CUI [1]
C0333678
Date of test (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
Description

Date of test

Data type

date

Alias
UMLS CUI [1]
C2826247
Identification of donor or Cord Blood Unit given by the centre
Description

Identification

Data type

text

Alias
UMLS CUI [1]
C1718162
Number in the infusion order (if applicable)
Description

Number in the infusion order

Data type

text

Alias
UMLS CUI [1]
C0237753
Cell type on which test was performed % Donor cells B-Cells
Description

Cell type on which test was performed

Data type

integer

Measurement units
  • %
Alias
UMLS CUI [1]
C0004561
Laboratory tests used
Description

Laboratory tests

Data type

integer

Alias
UMLS CUI [1]
C0022885
Test used: If other, specify:
Description

Specification other labaratory tests

Data type

text

Alias
UMLS CUI [1,1]
C0022885
UMLS CUI [1,2]
C2348235
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Description

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED

Data type

text

Date of Diagnosis
Description

Date of Diagnosis

Data type

date

Alias
UMLS CUI [1]
C2316983
Diagnosis OTHER COMPLICATIONS SINCE LAST REPORT
Description

Diagnosis OTHER COMPLICATIONS SINCE LAST REPORT

Data type

text

Alias
UMLS CUI [1]
C0011900
Diagnosis, other:
Description

Other diagnosis

Data type

text

Alias
UMLS CUI [1]
C0205394
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Description

ADDITIONAL THERAPIES SINCE LAST FOLLOW UP

Additional treatment given since last report
Description

Additional treatment

Data type

integer

Alias
UMLS CUI [1]
C1706712
If treatment given since last report
Description

Treatment given since last report

Data type

date

If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
Description

Cellular therapy

Data type

integer

Alias
UMLS CUI [1]
C0302189
Disease status before this cellular therapy
Description

Disease status before this cellular therapy

Data type

integer

Alias
UMLS CUI [1]
C0012634
If yes: Type of cells
Description

Type of cells

Data type

integer

Alias
UMLS CUI [1]
C0302189
If other
Description

Type of cells

Data type

text

Chronological number of this cell therapy for this patient
Description

Chronological number

Data type

float

Alias
UMLS CUI [1]
C2348184
Number of Nucleated cells infused (DLI only)
Description

Nucleated cells

Data type

integer

Measurement units
  • 10^8/kg
Alias
UMLS CUI [1]
C1180059
If DLI, specify the number of cells infused by type: CD 34+
Description

CD 34+

Data type

text

Alias
UMLS CUI [1]
C3538723
If DLI, specify the number of cells infused by type: CD 3+
Description

CD 3+

Data type

text

Alias
UMLS CUI [1]
C3542405
If non DLI, specify total number of cells infused:
Description

All cells

Data type

text

Alias
UMLS CUI [1]
C0007584
Cell therapy indication
Description

Cell therapy indication

Data type

integer

Alias
UMLS CUI [1,1]
C3146298
UMLS CUI [1,2]
C0302189
Number of infusions within 10 weeks (count only infusions that are part of same regimen and given for the same indication)
Description

Infusion count

Data type

float

Alias
UMLS CUI [1,1]
C0574032
UMLS CUI [1,2]
C0750480
Acute Graft versus Host Disease (after this infusion but before any further infusion/ transplant) Maximum grade:
Description

Acute Graft versus Host Disease

Data type

text

Alias
UMLS CUI [1]
C0856825
Disease treatment (apart from donor cell infusion or other type of cell therapy)
Description

Disease treatment

Data type

integer

Alias
UMLS CUI [1]
C0087111
Date started
Description

Datestarted

Data type

date

Alias
UMLS CUI [1]
C3173309
Overall main reason ADDITIONAL THERAPIES
Description

Overall main reason

Data type

integer

Alias
UMLS CUI [1,1]
C1706712
UMLS CUI [1,2]
C1443309
Of Other, please specify
Description

Overall main reason

Data type

text

Drugs
Description

Drugs

Data type

integer

Alias
UMLS CUI [1]
C0013227
If yes, mark appropriate box
Description

Drugs

Data type

text

Total lymph node (TLI)
Description

Irradiation (radiotherapy) Site

Data type

integer

Alias
UMLS CUI [1,1]
C0024204
UMLS CUI [1,2]
C1522449
Craniospinal
Description

Irradiation (radiotherapy9 Site

Data type

text

Lymphocytopheresis
Description

Lymphocytopheresis

Data type

text

Alias
UMLS CUI [1]
C0024226
if other modality please specify:
Description

Other modality

Data type

integer

Alias
UMLS CUI [1,1]
C0695347
UMLS CUI [1,2]
C1521902
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Description

FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT

EVIDENCE OF DISEASE ACTIVITY
Description

EVIDENCE OF DISEASE ACTIVITY

Data type

integer

Alias
UMLS CUI [1]
C0544450
Date First Noted (mm-dd-yyyy)
Description

Date First Noted

Data type

date

Alias
UMLS CUI [1]
C2316983
Number of relapses/progressions since last HSCT
Description

Number of relapses/progressions since last HSCT

Data type

float

Alias
UMLS CUI [1,1]
C0035020
UMLS CUI [1,2]
C0035020
LAST DISEASE AND PATIENT STATUS
Description

LAST DISEASE AND PATIENT STATUS

Scripps neurological rating scale Score
Description

Scripps neurological rating scale

Data type

float

Alias
UMLS CUI [1]
C0451180
Kurtzke functional systems Overall score
Description

Kurtzke functional systems

Data type

float

Alias
UMLS CUI [1]
C3826987
Kurtzke Expanded Disability Status Scale (EDSS)
Description

Kurtzke Expanded Disability Status

Data type

float

Alias
UMLS CUI [1]
C3887783
Composite Scale Score
Description

Composite Scale

Data type

float

Alias
UMLS CUI [1]
C4066222
MRI BRAIN SCAN DONE
Description

MRI BRAIN SCAN

Data type

integer

Alias
UMLS CUI [1]
C0412675
Date of most recent MRI scan of brain
Description

Date of most recent MRI scan of brain

Data type

date

Alias
UMLS CUI [1,1]
C0412675
UMLS CUI [1,2]
C0011008
Results, Are new lesions present on the MRI?
Description

Results

Data type

text

Alias
UMLS CUI [1,1]
C0412675
UMLS CUI [1,2]
C1274040
If yes Indicate new lesions present
Description

New lesions present on the MRI?

Data type

text

Has patient or partner become pregnant after this HSCT?
Description

Conception

Data type

text

Alias
UMLS CUI [1]
C0032961
Survival Status
Description

Survival Status

Data type

integer

Alias
UMLS CUI [1]
C1148433
Performance score (if alive)
Description

Performance score

Data type

integer

Alias
UMLS CUI [1]
C1518965
Score
Description

Performance score

Data type

integer

Alias
UMLS CUI [1]
C1518965
Cause of death (if dead)
Description

Cause of death

Data type

integer

Alias
UMLS CUI [1]
C0007465
HSCT related cause
Description

HSCT related cause

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0472699
ADDITIONAL NOTES IF APPLICABLE
Description

ADDITIONAL NOTES IF APPLICABLE

COMMENTS
Description

COMMENTS

Data type

integer

Alias
UMLS CUI [1]
C0947611
Identification
Description

Identification

Data type

text

Alias
UMLS CUI [1]
C0205396
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Similar models

EBMT Haemoglobinopathy follow up form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
FOLLOW UP Haemoglobinopathy
Unique Identification Code (UIC)
Item
Unique Identification Code (UIC) (if known)
text
C2348585 (UMLS CUI [1])
Date of this report
Item
Date of this report
date
C1302584 (UMLS CUI [1])
Item
Patient following national / international study / trial
integer
C1997894 (UMLS CUI [1])
Patient in Trial
Code List
Patient following national / international study / trial
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Name of study
Item
Name of study / trial
text
C0008976 (UMLS CUI [1])
Hospital Unique Patient Number
Item
Hospital Unique Patient Number
text
C2348585 (UMLS CUI [1])
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
Date of Birth
Item
Date of Birth
date
C0421451 (UMLS CUI [1])
Date of last HSCT for this patient
Item
Date of last HSCT for this patient
date
C0472699 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
PATIENT LAST SEEN
Item
DATE OF LAST CONTACT OR DEATH
date
C0805839 (UMLS CUI [1])
Item Group
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Item
Acute Graft versus Host Disease (aGvHD) - Maximum grade
integer
C0441799 (UMLS CUI [1,1])
C0856825 (UMLS CUI [1,2])
Grading
Code List
Acute Graft versus Host Disease (aGvHD) - Maximum grade
CL Item
grade I (grade I)
C0687695 (UMLS CUI-1)
CL Item
grade II (grade II)
C0441802 (UMLS CUI-1)
CL Item
grade III (grade III)
C0450094 (UMLS CUI-1)
CL Item
grade IV (grade IV)
C0547054 (UMLS CUI-1)
CL Item
not evaluated (not evaluated)
C3846720 (UMLS CUI-1)
CL Item
grade 0 (absent) (grade 0 (absent))
C0332197 (UMLS CUI-1)
Item
If present GvHD, Maximum grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
Maximum grade
Code List
If present GvHD, Maximum grade
CL Item
New onset (1)
C0746890 (UMLS CUI-1)
CL Item
Recurrent (2)
C2945760 (UMLS CUI-1)
CL Item
Persistent (3)
C0205322 (UMLS CUI-1)
Item
Reason Maximum grade
integer
C0441800 (UMLS CUI [1,1])
C0392360 (UMLS CUI [1,2])
Reason Maximum grade
Code List
Reason Maximum grade
CL Item
Tapering (1)
C0441640 (UMLS CUI-1)
CL Item
DLI (2)
C1512034 (UMLS CUI-1)
CL Item
Unexplained (3)
C0439673 (UMLS CUI-1)
Date onset of this episode
Item
Date onset of this episode (if new or recurrent)
date
C0574845 (UMLS CUI [1])
Item
Date onset of this episode
integer
C0574845 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Date onset of this episode
Code List
Date onset of this episode
CL Item
Not applicable (1)
C1272460 (UMLS CUI-1)
Item
aGvHD Stage Skin
integer
C1739372 (UMLS CUI [1])
aGvHD Stage Skin
Code List
aGvHD Stage Skin
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
aGvHD Stage liver
integer
C1739104 (UMLS CUI [1])
aGvHD Stage liver
Code List
aGvHD Stage liver
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
aGvHD stage gut
integer
C1737219 (UMLS CUI [1])
aGvHD stage gut
Code List
aGvHD stage gut
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
Resolution
integer
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
aGvHD Resolution
Code List
Resolution
CL Item
No  (1)
CL Item
Yes (2)
aGvHD Date of resolutions
Item
aGvHD Date of resolutions
date
Item
Presence of cGvHD
text
C0867389 (UMLS CUI [1])
Chronic Graft versus Host Disease (cGvHD)
Code List
Presence of cGvHD
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
cGvHD grade
integer
C0867389 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
cGvHD grade
Code List
cGvHD grade
CL Item
limited (1)
CL Item
Extensive (2)
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Organs affected
Code List
Organs affected
CL Item
Skin (1)
C1123023 (UMLS CUI-1)
CL Item
Gut (2)
C0021853 (UMLS CUI-1)
CL Item
Liver (3)
C0023884 (UMLS CUI-1)
CL Item
Mouth (4)
C0230028 (UMLS CUI-1)
CL Item
Eyes (5)
C0015392 (UMLS CUI-1)
CL Item
Lung (6)
C0024109 (UMLS CUI-1)
CL Item
Other, specify (7)
CL Item
Unknown (8)
C0439673 (UMLS CUI-1)
Organs affected
Item
If other organs affected, please specify
integer
C0178784 (UMLS CUI [1])
cGvHD Resolved: Date of resolution
Item
cGvHD Resolved: Date of resolution
date
C0867389 (UMLS CUI [1,1])
C2985858 (UMLS CUI [1,2])
Item Group
OTHER COMPLICATIONS SINCE LAST REPORT
Item
INFECTION RELATED COMPLICATIONS
integer
C0009450 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
INFECTION RELATED COMPLICATIONS
Code List
INFECTION RELATED COMPLICATIONS
CL Item
No complications (1)
CL Item
Yes (2)
Item
Bacteremia / fungemia / viremia / parasites
integer
C0004610 (UMLS CUI [1,1])
C0085082 (UMLS CUI [1,2])
C0042749 (UMLS CUI [1,3])
C0030498 (UMLS CUI [1,4])
Bacteremia / fungemia / viremia / parasites
Code List
Bacteremia / fungemia / viremia / parasites
CL Item
Pathogen (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Septic shock
integer
C0036983 (UMLS CUI [1])
Septic shock
Code List
Septic shock
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
ARDS
integer
C0035222 (UMLS CUI [1])
ARDS
Code List
ARDS
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Multiorgan failure due to infection
integer
C0026766 (UMLS CUI [1])
Multiorgan failure due to infection
Code List
Multiorgan failure due to infection
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Pneumonia
integer
C0032285 (UMLS CUI [1])
Pneumonia
Code List
Pneumonia
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Hepatitis
integer
C0019158 (UMLS CUI [1])
Hepatitis
Code List
Hepatitis
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
CNS infection
integer
C0007684 (UMLS CUI [1])
CNS infection
Code List
CNS infection
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Gut infection
integer
C0178238 (UMLS CUI [1])
Gut infection
Code List
Gut infection
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Skin infection
text
C0037278 (UMLS CUI [1])
Skin infection
Code List
Skin infection
CL Item
Pathogen  (1)
C0450254 (UMLS CUI-1)
CL Item
Date (2)
C0011008 (UMLS CUI-1)
Item
Cystitis
text
C0010692 (UMLS CUI [1])
Cystitis
Code List
Cystitis
CL Item
Pathogen (Pathogen)
C0450254 (UMLS CUI-1)
CL Item
Date (Date)
C0011008 (UMLS CUI-1)
Item
Retinitis
text
C0035333 (UMLS CUI [1])
Retinitis
Code List
Retinitis
CL Item
Pathogen (Pathogen)
CL Item
Date (Date)
Other pathogen specified
Item
Other pathogen specified
integer
C0450254 (UMLS CUI [1])
Item
NON INFECTION RELATED COMPLICATIONS
integer
C0009566 (UMLS CUI [1])
NON INFECTION RELATED COMPLICATIONS
Code List
NON INFECTION RELATED COMPLICATIONS
CL Item
No complications (1)
CL Item
Yes (2)
Item
Idiopathic pneumonia syndrome
integer
C1504431 (UMLS CUI [1])
Idiopathic pneumonia syndrome
Code List
Idiopathic pneumonia syndrome
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
VOD
integer
C0948441 (UMLS CUI [1])
VOD
Code List
VOD
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Cataract
text
C0086543 (UMLS CUI [1])
Cataract
Code List
Cataract
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Haemorrhagic cystitis, non infectious
Code List
Haemorrhagic cystitis, non infectious
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Specify: ARDS, non infectious
text
C0035222 (UMLS CUI [1])
ARDS, non infectious
Code List
Specify: ARDS, non infectious
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Multiorgan failure, non infectious
integer
C0026766 (UMLS CUI [1])
Multiorgan failure, non infectious
Code List
Multiorgan failure, non infectious
CL Item
yes  (yes )
CL Item
no  (no )
CL Item
unknown (unknown)
Item
HSCT-associated microangiopathy
integer
C0155765 (UMLS CUI [1])
HSCT-associated microangiopathy
Code List
HSCT-associated microangiopathy
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Date (4)
Item
Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
Renal failure requiring dialysis
Code List
Renal failure requiring dialysis
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Date (Date)
Item
Haemolytic anaemia due to blood group
integer
C0002878 (UMLS CUI [1])
Haemolytic anaemia due to blood group
Code List
Haemolytic anaemia due to blood group
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Date (4)
Item
Aseptic bone necrosis
text
C0158452 (UMLS CUI [1])
Aseptic bone necrosis
Code List
Aseptic bone necrosis
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Date (Date)
Other type of NON INFECTION RELATED COMPLICATIONS
Item
Other type of NON INFECTION RELATED COMPLICATIONS, please specify
text
Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
C1504431 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
Graft loss
text
C0877042 (UMLS CUI [1])
Graft loss
Code List
Graft loss
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
Item
Overall chimaerism
text
C0333678 (UMLS CUI [1])
Overall chimaerism
Code List
Overall chimaerism
CL Item
Full (donor >95%) (1)
C0443225 (UMLS CUI-1)
CL Item
Mixed (partial) (2)
C0205430 (UMLS CUI-1)
CL Item
Autologuos reconstitution (recipient > 95%) (3)
C0301944 (UMLS CUI-1)
CL Item
Aplasia (4)
C0243065 (UMLS CUI-1)
CL Item
Not evaluated (5)
C3846720 (UMLS CUI-1)
Date of test
Item
Date of test (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
date
C2826247 (UMLS CUI [1])
Identification
Item
Identification of donor or Cord Blood Unit given by the centre
text
C1718162 (UMLS CUI [1])
Number in the infusion order
Item
Number in the infusion order (if applicable)
text
C0237753 (UMLS CUI [1])
Item
Cell type on which test was performed % Donor cells B-Cells
integer
C0004561 (UMLS CUI [1])
Cell type on which test was performed
Code List
Cell type on which test was performed % Donor cells B-Cells
CL Item
BM (1)
C0005953 (UMLS CUI-1)
CL Item
PB mononuclear cells (PBMC) (2)
C1321301 (UMLS CUI-1)
CL Item
T-cell (3)
C0039194 (UMLS CUI-1)
CL Item
B-cells (4)
C0004561 (UMLS CUI-1)
CL Item
Red blood cells (5)
C0014772 (UMLS CUI-1)
CL Item
Monocytes (6)
C0026473 (UMLS CUI-1)
CL Item
PMNs (neutrophils) (7)
C0200633 (UMLS CUI-1)
CL Item
Lymphocytes, NOS (8)
C0024264 (UMLS CUI-1)
CL Item
Myeloid cells, NOS (9)
C0887899 (UMLS CUI-1)
CL Item
Other, specify (10)
C1707811 (UMLS CUI-1)
C3840932 (UMLS CUI-2)
Item
Laboratory tests used
integer
C0022885 (UMLS CUI [1])
Laboratory tests
Code List
Laboratory tests used
CL Item
FISH (FISH)
C0162789 (UMLS CUI-1)
CL Item
Molecular (Molecular)
C0026376 (UMLS CUI-1)
CL Item
Cytogenetic (Cytogenetic)
C0010802 (UMLS CUI-1)
CL Item
ABO group (ABO group)
C0000778 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
CL Item
unknown (unknown)
C0439673 (UMLS CUI-1)
Specification other labaratory tests
Item
Test used: If other, specify:
text
C0022885 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
text
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Code List
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
CL Item
Previously reported (Previously reported)
CL Item
Yes (Yes)
CL Item
No at date of this follow-up (No at date of this follow-up)
Date of Diagnosis
Item
Date of Diagnosis
date
C2316983 (UMLS CUI [1])
Item
Diagnosis OTHER COMPLICATIONS SINCE LAST REPORT
text
C0011900 (UMLS CUI [1])
Diagnosis
Code List
Diagnosis OTHER COMPLICATIONS SINCE LAST REPORT
CL Item
AML (AML)
C0023467 (UMLS CUI-1)
CL Item
MDS (MDS)
C3463824 (UMLS CUI-1)
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
C0024314 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
Other diagnosis
Item
Diagnosis, other:
text
C0205394 (UMLS CUI [1])
Item Group
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Item
Additional treatment given since last report
integer
C1706712 (UMLS CUI [1])
Additional treatment
Code List
Additional treatment given since last report
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
Date (4)
Treatment given since last report
Item
If treatment given since last report
date
Item
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
integer
C0302189 (UMLS CUI [1])
Cellular therapy
Code List
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
CL Item
No  (1)
CL Item
Yes (Mark disease status before this cellular therapy) (2)
CL Item
Unknown (3)
Item
Disease status before this cellular therapy
integer
C0012634 (UMLS CUI [1])
Disease status before this cellular therapy
Code List
Disease status before this cellular therapy
CL Item
CR (CR)
C0677874 (UMLS CUI-1)
CL Item
Not in CR (Not in CR)
C0677874 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
Item
If yes: Type of cells
integer
C0302189 (UMLS CUI [1])
Type of cells
Code List
If yes: Type of cells
CL Item
Donor lymphocyte infusion (DLI) (1)
C1512034 (UMLS CUI-1)
CL Item
Mesenchymal cells (2)
C1257975 (UMLS CUI-1)
CL Item
Other (3)
C0205394 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Type of cells
Item
If other
text
Chronological number
Item
Chronological number of this cell therapy for this patient
float
C2348184 (UMLS CUI [1])
Item
Number of Nucleated cells infused (DLI only)
integer
C1180059 (UMLS CUI [1])
Nucleated cells
Code List
Number of Nucleated cells infused (DLI only)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
Item
If DLI, specify the number of cells infused by type: CD 34+
text
C3538723 (UMLS CUI [1])
CD 34+
Code List
If DLI, specify the number of cells infused by type: CD 34+
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Item
If DLI, specify the number of cells infused by type: CD 3+
text
C3542405 (UMLS CUI [1])
CD 3+
Code List
If DLI, specify the number of cells infused by type: CD 3+
CL Item
Evaluated  (Evaluated )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
If non DLI, specify total number of cells infused:
text
C0007584 (UMLS CUI [1])
All cells
Code List
If non DLI, specify total number of cells infused:
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Item
Cell therapy indication
integer
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
Cell therapy indication
Code List
Cell therapy indication
CL Item
Planned/protocol  (1)
CL Item
Treatment for disease (2)
CL Item
Prophylactic (3)
CL Item
Mixed chimaerism (4)
CL Item
Treatment of GvHD  (5)
CL Item
Treatment viral infection (6)
CL Item
Loss/decreased chimaerism  (7)
CL Item
Treatment PTLD, EBV lymphoma (8)
CL Item
Other, specify (9)
Infusion count
Item
Number of infusions within 10 weeks (count only infusions that are part of same regimen and given for the same indication)
float
C0574032 (UMLS CUI [1,1])
C0750480 (UMLS CUI [1,2])
Item
Acute Graft versus Host Disease (after this infusion but before any further infusion/ transplant) Maximum grade:
text
C0856825 (UMLS CUI [1])
Acute Graft versus Host Disease
Code List
Acute Graft versus Host Disease (after this infusion but before any further infusion/ transplant) Maximum grade:
CL Item
grade 0 (absent) (grade 0 (absent))
CL Item
grade 1 (grade 1)
CL Item
grade 2 (grade 2)
CL Item
grade 3 (grade 3)
CL Item
grade 4 (grade 4)
CL Item
present, grade unknown (present, grade unknown)
Item
Disease treatment (apart from donor cell infusion or other type of cell therapy)
integer
C0087111 (UMLS CUI [1])
Disease treatment
Code List
Disease treatment (apart from donor cell infusion or other type of cell therapy)
CL Item
No (1)
CL Item
Yes: Planned (planned before HSCT took place) (2)
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (3)
Datestarted
Item
Date started
date
C3173309 (UMLS CUI [1])
Item
Overall main reason ADDITIONAL THERAPIES
integer
C1706712 (UMLS CUI [1,1])
C1443309 (UMLS CUI [1,2])
Overall main reason
Code List
Overall main reason ADDITIONAL THERAPIES
CL Item
Relapse/progression (1)
C0449438 (UMLS CUI-1)
C0678257 (UMLS CUI-2)
CL Item
Continued from pre-HSCT (2)
CL Item
unknow (3)
C0439673 (UMLS CUI-1)
CL Item
Planned per protocol (4)
CL Item
Other (5)
Overall main reason
Item
Of Other, please specify
text
Item
Drugs
integer
C0013227 (UMLS CUI [1])
Drugs
Code List
Drugs
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
If yes, mark appropriate box
text
Drugs
Code List
If yes, mark appropriate box
CL Item
Cyclophosphamide (Cyclophosphamide)
C0010583 (UMLS CUI-1)
CL Item
Mitoxantron (Mitoxantron)
C0026259 (UMLS CUI-1)
CL Item
Anti-lymphocyte antibodies (Anti-lymphocyte antibodies)
C0003369 (UMLS CUI-1)
CL Item
Corticosteroids (Corticosteroids)
C0001617 (UMLS CUI-1)
CL Item
low dose (Chronic low dose)
C0001617 (UMLS CUI-1)
C1708745 (UMLS CUI-2)
CL Item
high dose (Pulse high dose)
C2065041 (UMLS CUI-1)
C0444956 (UMLS CUI-2)
CL Item
Azathioprine (Azathioprine)
C0004482 (UMLS CUI-1)
CL Item
CopI (Cop-I)
C0887887 (UMLS CUI-1)
CL Item
Alpha interferon (Alpha interferon)
C0002199 (UMLS CUI-1)
CL Item
Interferon Beta  (Beta Interferon)
C0015980 (UMLS CUI-1)
Item
Total lymph node (TLI)
integer
C0024204 (UMLS CUI [1,1])
C1522449 (UMLS CUI [1,2])
Total lymph node (TLI)
Code List
Total lymph node (TLI)
CL Item
NO (NO)
CL Item
YES (YES)
CL Item
UNKNOWN (UNKNOWN)
Item
text
Craniospinal
Code List
Craniospinal
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
Lymphocytopheresis
text
C0024226 (UMLS CUI [1])
Lymphocytopheresis
Code List
Lymphocytopheresis
CL Item
no (no)
CL Item
yes  (yes )
CL Item
unknown (unknown)
Other modality
Item
if other modality please specify:
integer
C0695347 (UMLS CUI [1,1])
C1521902 (UMLS CUI [1,2])
Item Group
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Item
EVIDENCE OF DISEASE ACTIVITY
integer
C0544450 (UMLS CUI [1])
EVIDENCE OF DISEASE ACTIVITY
Code List
EVIDENCE OF DISEASE ACTIVITY
CL Item
Previously reported (Previously reported)
C0205309 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
Continuous worsening since HSCT (Continuous worsening since HSCT)
C0332271 (UMLS CUI-1)
Date First Noted
Item
Date First Noted (mm-dd-yyyy)
date
C2316983 (UMLS CUI [1])
Number of relapses/progressions since last HSCT
Item
Number of relapses/progressions since last HSCT
float
C0035020 (UMLS CUI [1,1])
C0035020 (UMLS CUI [1,2])
Item Group
LAST DISEASE AND PATIENT STATUS
Scripps neurological rating scale
Item
Scripps neurological rating scale Score
float
C0451180 (UMLS CUI [1])
Kurtzke functional systems
Item
Kurtzke functional systems Overall score
float
C3826987 (UMLS CUI [1])
Kurtzke Expanded Disability Status
Item
Kurtzke Expanded Disability Status Scale (EDSS)
float
C3887783 (UMLS CUI [1])
Composite Scale
Item
Composite Scale Score
float
C4066222 (UMLS CUI [1])
Item
MRI BRAIN SCAN DONE
integer
C0412675 (UMLS CUI [1])
MRI BRAIN SCAN DONE
Code List
MRI BRAIN SCAN DONE
CL Item
Not done (Not done)
C1272696 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
Date of most recent MRI scan of brain
Item
Date of most recent MRI scan of brain
date
C0412675 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
Results, Are new lesions present on the MRI?
text
C0412675 (UMLS CUI [1,1])
C1274040 (UMLS CUI [1,2])
Results
Code List
Results, Are new lesions present on the MRI?
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
If yes Indicate new lesions present
text
New lesions present on the MRI?
Code List
If yes Indicate new lesions present
CL Item
Gadolinium-enhancing (Gadolinium-enhancing)
C0016911 (UMLS CUI-1)
CL Item
Unenhancing (Unenhancing)
CL Item
Both (Both)
C1706086 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
Item
Has patient or partner become pregnant after this HSCT?
text
C0032961 (UMLS CUI [1])
Conception
Code List
Has patient or partner become pregnant after this HSCT?
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Survival Status
integer
C1148433 (UMLS CUI [1])
Survival Status
Code List
Survival Status
CL Item
alive (0)
C2584946 (UMLS CUI-1)
CL Item
dead (1)
C0011065 (UMLS CUI-1)
Item
Performance score (if alive)
integer
C1518965 (UMLS CUI [1])
Performance score
Code List
Performance score (if alive)
CL Item
Karnofsky (1)
C0206065 (UMLS CUI-1)
CL Item
Lansky (2)
C1522275 (UMLS CUI-1)
Item
Score
integer
C1518965 (UMLS CUI [1])
Performance score
Code List
Score
CL Item
100 (Normal, NED) (1)
CL Item
90 (Normal activity)  (2)
CL Item
80 (Normal with effort) (3)
CL Item
70 (Cares for self) (4)
CL Item
60 (Requires occasional assistance) (5)
CL Item
50 (Requires assistance) (6)
CL Item
40 (Disabled) (7)
CL Item
30 (Severely disabled) (8)
CL Item
20 (Very sick) (9)
CL Item
10 (Moribund) (10)
CL Item
Not evaluated (11)
CL Item
Unknown (12)
Item
Cause of death (if dead)
integer
C0007465 (UMLS CUI [1])
Cause of death
Code List
Cause of death (if dead)
CL Item
Relapse or progression (1)
CL Item
Secondary malignancy (including lymphoproliferative disease) (2)
CL Item
HSCT related cause  (3)
CL Item
Unknown (4)
CL Item
Other (5)
Item
HSCT related cause
integer
C0007465 (UMLS CUI [1,1])
C0472699 (UMLS CUI [1,2])
HSCT related cause
Code List
HSCT related cause
CL Item
GvHD (1)
C0018133 (UMLS CUI-1)
CL Item
Interstitial pneumonitis (2)
C0206061 (UMLS CUI-1)
CL Item
Pulmonary toxicity (3)
C0919924 (UMLS CUI-1)
CL Item
Infection bacterial (4)
C0004623 (UMLS CUI-1)
CL Item
Infection viral (5)
C0042769 (UMLS CUI-1)
CL Item
Infection fungal (6)
C0026946 (UMLS CUI-1)
CL Item
Infection parasitic (7)
C0030498 (UMLS CUI-1)
CL Item
Infection unknown (8)
C0009450 (UMLS CUI-1)
CL Item
Rejection / poor graft function (9)
C0018129 (UMLS CUI-1)
CL Item
Veno-occlusive disease (VOD) (10)
C0948441 (UMLS CUI-1)
CL Item
Haemorrhage (11)
C0019080 (UMLS CUI-1)
CL Item
Cardiac toxicity (12)
C0876994 (UMLS CUI-1)
CL Item
Central nervous system toxicity (13)
C3160947 (UMLS CUI-1)
CL Item
Gastro intestinal toxicity (14)
C1142499 (UMLS CUI-1)
CL Item
Skin toxicity (15)
C1167791 (UMLS CUI-1)
CL Item
Renal failure (16)
C1533077 (UMLS CUI-1)
CL Item
Multiple organ failure (17)
C0026766 (UMLS CUI-1)
CL Item
Other (18)
C0205394 (UMLS CUI-1)
Item Group
ADDITIONAL NOTES IF APPLICABLE
COMMENTS
Item
COMMENTS
integer
C0947611 (UMLS CUI [1])
Identification
Item
Identification
text
C0205396 (UMLS CUI [1])
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