ID

14334

Description

DOCUMENTED PATHOGENS INFECTION RELATED COMPLICATIONS Bacteria:S. pneumoniae, Other gram positive (i.e.: other streptococci, staphylococci, listeria), Haemophilus influenzae, Other gram negative (i.e.: E. coli klebsiella, proteus, serratia, pseudomonas …), Legionella sp, Mycobacteria sp, Other Fungi: Candida sp, Aspergillus sp, Pneumocystis carinii, Other Parasites:Toxoplasma gondii, other Viruses: HSV,VZV, EBV, CMV, HHV-6, RSV, Other respiratory virus (influenza, parainfluenza, rhinovirus), Adenovirus, HBV, HCV, HIV, Papovavirus, Parvovirus, Other

Mots-clés

  1. 11/04/2016 11/04/2016 -
  2. 27/06/2016 27/06/2016 -
Téléchargé le

11 avril 2016

DOI

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Licence

Creative Commons BY-NC 3.0

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15pp EBMT Multiple Sclerosis

15pp EBMT Multiple Sclerosis13MS

GENERAL INFORMATION Team
Description

GENERAL INFORMATION Team

EBMT Centre Identification Code (CIC)
Description

EBMT Centre Identification Code (CIC)

Type de données

text

Alias
UMLS CUI [1]
C2348585
Hospital
Description

Klinik

Type de données

text

Alias
UMLS CUI [1]
C0019994
Unit
Description

Unit

Type de données

text

Name of contact person
Description

Contact person

Type de données

text

Alias
UMLS CUI [1]
C0337611
Telephone
Description

Patient phone number

Type de données

text

Alias
UMLS CUI [1]
C1515258
Fax
Description

ContactPersonFaxNumber

Type de données

text

Alias
UMLS CUI [1,1]
C0237753
UMLS CUI [1,2]
C0027361
UMLS CUI [1,3]
C0337611
UMLS CUI [1,4]
C0085205
E-mail
Description

ContactPersonE-mailText

Type de données

text

Alias
UMLS CUI [1,1]
C1527021
UMLS CUI [1,2]
C0027361
UMLS CUI [1,3]
C0013849
UMLS CUI [1,4]
C0337611
Date of this report
Description

Date of this report

Type de données

date

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

Patient in Trial

Type de données

integer

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

Name of study / trial

Type de données

text

PATIENT
Description

PATIENT

To be entered only if patient previously reported
Description

Unique Identification Code (UIC)

Type de données

text

Alias
UMLS CUI [1]
C2348585
Hospital Unique Patient Number or Code
Description

Hospital Unique Patient Number or Code

Type de données

text

Alias
UMLS CUI [1]
C1827636
First name(s)_surname(s)
Description

Initials

Type de données

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Description

Date of birth

Type de données

date

Alias
UMLS CUI [1]
C0421451
Sex
Description

Sex

Type de données

text

Alias
UMLS CUI [1]
C0079399
ABO Group
Description

ABO Group

Type de données

text

Rh factor
Description

Rh factor

Type de données

integer

DISEASE
Description

DISEASE

Date of Diagnosis
Description

Date of Diagnosis

Type de données

date

Alias
UMLS CUI [1]
C2316983
Check the disease for which this transplant was performed
Description

Primary Disease Diagnosis

Type de données

text

Alias
UMLS CUI [1]
C0277554
If other diagnosis, specify:
Description

Primary Disease Diagnosis

Type de données

text

Alias
UMLS CUI [1,1]
C0277554
UMLS CUI [1,2]
C2348235
MULTIPLE SCLEROSIS
Description

MULTIPLE SCLEROSIS

Neurologist Name
Description

Neurologist Name

Type de données

text

Address
Description

Address

Type de données

text

Fax
Description

Fax

Type de données

text

Alias
UMLS CUI [1,1]
C1549619
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0030664
Email
Description

Email

Type de données

text

Alias
UMLS CUI [1]
C0013849
INITIAL DIAGNOSIS
Description

INITIAL DIAGNOSIS

has the information requested in this section been submitted with a previous HSCT registration?
Description

Previous HSCT registration

Type de données

text

Alias
UMLS CUI [1]
C1514821
Did the patient meet the Poser criteria for clinically-definite Multiple Sclerosis? (Two attacks and clinical evidence of two separate lesions OR Two attacks; clinical evidence of one lesion and paraclinical evidence of another, separate lesion)
Description

DIAGNOSTIC CRITERIA

Type de données

integer

Did the patient meet the criteria for laboratory-supported Multiple Sclerosis?
Description

DIAGNOSTIC CRITERIA

Type de données

integer

FIRST LINE THERAPIES
Description

FIRST LINE THERAPIES

THERAPIES
Description

THERAPIES

Type de données

integer

THERAPIES Date started
Description

THERAPIES Date started

Type de données

date

Drugs
Description

Drugs

Type de données

integer

if drugs, mark appropriate box
Description

Drugs

Type de données

text

Irradiation (radiotherapy) Site
Description

Total lymph node (TLI)

Type de données

integer

Irradiation (radiotherapy) Site
Description

Craniospinal

Type de données

integer

Other modality Lymphocytopheresis
Description

Lymphocytopheresis

Type de données

integer

Other modality Plasmapheresis
Description

Plasmapheresis

Type de données

integer

Other, specify modality
Description

Other, specify modality

Type de données

text

DATE OF HSCT
Description

DATE OF HSCT

Date of HSCT
Description

Date of HSCT

Type de données

date

Alias
UMLS CUI [1]
C2584899
TRANSPLANT TYPE
Description

TRANSPLANT TYPE

Type de données

integer

if Transplat type Autologous: Mobilised
Description

Autologous: Mobilised

Type de données

text

Date of Autologous: Mobilised
Description

Date of Autologous: Mobilised

Type de données

date

STATUS OF DISEASE AT MOBILISATION
Description

STATUS OF DISEASE AT MOBILISATION

Scripps neurological rating scale Score
Description

CLINICAL EVALUATION

Type de données

integer

Scripps neurological rating scale
Description

CLINICAL EVALUATION

Type de données

integer

Kurtze functional systems Overall score
Description

CLINICAL EVALUATION

Type de données

text

Kurtze functional systems
Description

Kurtze functional systems

Type de données

integer

Kurtze Expanded Disability Status Scale (EDSS)
Description

CLINICAL EVALUATION

Type de données

text

Kurtze Expanded Disability Status
Description

Kurtze Expanded Disability Status

Type de données

integer

Composite Scale Score
Description

CLINICAL EVALUATION

Type de données

text

Composite Scale
Description

CLINICAL EVALUATION

Type de données

integer

MRI BRAIN SCAN DONE
Description

MRI BRAIN SCAN DONE

Type de données

text

Date of most recent MRI scan of brain
Description

Date of most recent MRI scan of brain

Type de données

date

Gadolinium-enhancing lesions present Results
Description

Gadolinium-enhancing lesions present Results

Type de données

text

If Gadolinium-enhancing lesions present
Description

Gadolinium-enhancing lesions present Number

Type de données

integer

STATUS OF DISEASE AT HSCT
Description

STATUS OF DISEASE AT HSCT

DISEASE COURSE
Description

Indicate the disease course between diagnosis and mobilisation/HSCT

Type de données

text

If DISEASE COURSE not evaluable please explain
Description

DISEASE COURSE

Type de données

text

Did the patient progress during the 2-years prior to mobilisation/HSCT?
Description

Did the patient progress during the 2-years prior to mobilisation/HSCT?

Type de données

text

If the patient progress during the 2-years prior to mobilisation/HSCT?
Description

number of relapses/progressions

Type de données

integer

Scripps neurological rating scale Score
Description

CLINICAL EVALUATION

Type de données

text

Scripps neurological rating scale
Description

CLINICAL EVALUATION

Type de données

integer

Kurtze functional systems Overall score
Description

CLINICAL EVALUATION

Type de données

text

Kurtze functional systems
Description

CLINICAL EVALUATION

Type de données

integer

Kurtze Expanded Disability Status Scale (EDSS)
Description

CLINICAL EVALUATION

Type de données

text

Kurtze Expanded Disability Status
Description

CLINICAL EVALUATION

Type de données

integer

Composite Scale Score
Description

CLINICAL EVALUATION

Type de données

text

Composite Scale
Description

CLINICAL EVALUATION

Type de données

integer

MRI BRAIN SCAN DONE
Description

MRI BRAIN SCAN DONE

Type de données

text

If MRI BRAIN SCAN DONE Date of most recent MRI scan of brain:
Description

Date of most recent MRI scan of brain

Type de données

date

Date of most recent MRI scan of brain:
Description

Date of most recent MRI scan of brain:

Type de données

integer

Gadolinium-enhancing lesions present
Description

Results

Type de données

text

Gadolinium-enhancing lesions present
Description

Gadolinium-enhancing lesions present

Type de données

text

ADDITIONAL TREATMENT POST-HSCT
Description

ADDITIONAL TREATMENT POST-HSCT

ADDITIONAL TREATMENT FOR MULTIPLE SCLERORIS
Description

Did patient receive additional treatment post-HSCT?

Type de données

text

Date started if patient receive additional treatment post-HSCT
Description

Date started if patient receive additional treatment post-HSCT

Type de données

date

Overall main reason
Description

Overall main reason

Type de données

integer

If other, please specify
Description

Overall main reason

Type de données

text

Drugs
Description

Drugs

Type de données

text

If drugs
Description

Drugs

Type de données

integer

Irradiation (radiotherapy) Total lymph node (TLI)
Description

Site

Type de données

integer

Craniospinal
Description

Irradiation (radiotherapy)

Type de données

integer

Other modality Lymphocytopheresis
Description

Other modality Lymphocytopheresis

Type de données

integer

Other modality Plasmapheresis
Description

Other modality Plasmapheresis

Type de données

integer

If other modality please specify
Description

Other modality

Type de données

text

STATUS AT 100 DAYS POST-HSCT
Description

STATUS AT 100 DAYS POST-HSCT

DATE OF EVALUATION
Description

DATE OF EVALUATION

Type de données

date

CLINICAL EVALUATION Scripps neurological rating scale
Description

Score

Type de données

float

CLINICAL EVALUATION Scripps neurological rating scale
Description

CLINICAL EVALUATION Scripps neurological rating scale

Type de données

integer

CLINICAL EVALUATION Kurtze functional systems
Description

Overall score

Type de données

float

CLINICAL EVALUATION Kurtze functional systems
Description

CLINICAL EVALUATION Kurtze functional systems

Type de données

integer

CLINICAL EVALUATION Kurtze Expanded Disability Status
Description

Scale (EDSS)

Type de données

float

CLINICAL EVALUATION Kurtze Expanded Disability Status
Description

CLINICAL EVALUATION Kurtze Expanded Disability Status

Type de données

integer

CLINICAL EVALUATION Composite Scale
Description

Score

Type de données

float

CLINICAL EVALUATION Composite Scale
Description

Score

Type de données

integer

MRI BRAIN SCAN DONE
Description

MRI BRAIN SCAN DONE

Type de données

text

If MRI BRAIN SCAN DONE Date of most recent MRI scan of brain
Description

MRI BRAIN SCAN DONE

Type de données

date

Results
Description

Are new lesions present on the MRI?

Type de données

integer

If results Indicate new lesions present
Description

Results

Type de données

integer

FORMS TO BE FILLED IN
Description

FORMS TO BE FILLED IN

Type of Transplant
Description

Type of Transplant

Type de données

text

Alias
UMLS CUI [1,1]
C0559189
UMLS CUI [1,2]
C0040739
If Other Type of Transplant please specify
Description

TYPE OF TRANSPLANT

Type de données

text

FOLLOW UP MULTIPLE SCLEROSIS
Description

FOLLOW UP MULTIPLE SCLEROSIS

Unique Identification Code (UIC) (if known)
Description

Unique Identification Code (UIC)

Type de données

text

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

Date of this report

Type de données

date

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

Patient in Trial

Type de données

integer

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

Name of study / trial

Type de données

text

Hospital Unique Patient Number
Description

Hospital Unique Patient Number

Type de données

text

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

Initials

Type de données

text

Alias
UMLS CUI [1]
C2986440
Date of Birth
Description

PersonBirthDate

Type de données

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0027361
UMLS CUI [1,3]
C0005615
Date of last HSCT for this patient
Description

Date of last HSCT for this patient

Type de données

date

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

PATIENT LAST SEEN

Type de données

date

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

Grading

Type de données

text

Alias
UMLS CUI [1]
C0441799
If present
Description

Maximum grade

Type de données

integer

Reason Maximum grade
Description

Reason Maximum grade

Type de données

integer

Date onset of this episode (if new or recurrent)
Description

Date onset of this episode

Type de données

date

Unités de mesure
  • yyyy/mm/dd
Alias
UMLS CUI [1]
C0574845
yyyy/mm/dd
Date onset of this episode
Description

Date onset of this episode

Type de données

integer

Stage skin
Description

aGvHD Stage Skin

Type de données

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C1306673
Stage liver
Description

aGvHD Stage liver

Type de données

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0023884
Stage gut
Description

aGvHD stage gut

Type de données

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0021853
Resolution
Description

aGvHD Resolution

Type de données

integer

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

aGvHD Date of resolutions

Type de données

date

Presence of cGvHD
Description

Chronic Graft versus Host Disease (cGvHD)

Type de données

text

Alias
UMLS CUI [1]
C0867389
Date of onset
Description

Date of onset

Type de données

date

Alias
UMLS CUI [1]
C0574845
cGvHD grade
Description

cGvHD grade

Type de données

integer

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

Organs affected

Type de données

integer

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

Organs affected

Type de données

text

cGvHD Resolved: Date of resolution
Description

cGvHD Resolved: Date of resolution

Type de données

date

OTHER COMPLICATIONS SINCE LAST REPORT
Description

OTHER COMPLICATIONS SINCE LAST REPORT

INFECTION RELATED COMPLICATIONS
Description

INFECTION RELATED COMPLICATIONS

Type de données

integer

Bacteremia / fungemia / viremia / parasites Pathogen
Description

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

Type de données

text

Date Bacteremia / fungemia / viremia / parasites
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Pathogen Septic shock
Description

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

Type de données

text

Date Septic shock
Description

Date Septic shock

Type de données

date

Pathogen ARDS
Description

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

Type de données

text

Date ARDS
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Pathogen Multiorgan failure due to infection
Description

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

Type de données

text

Date Multiorgan failure due to infection
Description

Date Multiorgan failure due to infection

Type de données

date

Pathogen Pneumonia
Description

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

Type de données

text

Date Pneumonia
Description

Provide different dates for different episodes of the same complication if applicable

Type de données

date

Pathogen Hepatitis
Description

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

Type de données

text

Date Hepatitis
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Pathogen CNS infection
Description

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

Type de données

text

Date CNS infection
Description

Provide different dates for different episodes of the same complication if applicable

Type de données

date

Pathogen Gut infection
Description

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

Type de données

text

Date Gut infection
Description

Date Gut infection

Type de données

date

Pathogen Skin infection
Description

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

Type de données

text

Date Skin infection
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Pathogen Cystitis
Description

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

Type de données

text

Date Cystitis
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Pathogen Retinitis
Description

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

Type de données

text

Date Retinitis
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

Other pathogen specified
Description

Other pathogen specified

Type de données

text

Date Other Pathogen
Description

Provide different dates for different episodes of the same complication if applicable.

Type de données

date

NON INFECTION RELATED COMPLICATIONS
Description

NON INFECTION RELATED COMPLICATIONS

Type de données

integer

Specify: Idiopathic pneumonia syndrome
Description

Idiopathic pneumonia syndrome

Type de données

text

Alias
UMLS CUI [1]
C1504431
Specify: VOD
Description

VOD

Type de données

integer

Alias
UMLS CUI [1]
C0948441
Specify: Cataract
Description

Cataract

Type de données

text

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

Haemorrhagic cystitis, non infectious

Type de données

text

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

ARDS, non infectious

Type de données

text

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

Multiorgan failure, non infectious

Type de données

text

Specify: HSCT-associated microangiopathy
Description

HSCT-associated microangiopathy

Type de données

text

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

Renal failure requiring dialysis

Type de données

text

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

Haemolytic anaemia due to blood group

Type de données

text

Alias
UMLS CUI [1]
C0002878
Specify: Aseptic bone necrosis
Description

Aseptic bone necrosis

Type de données

text

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

Other type of NON INFECTION RELATED COMPLICATIONS

Type de données

text

Idiopathic pneumonia syndrome Date
Description

Idiopathic pneumonia syndrome Date

Type de données

date

VOD Date
Description

VOD Date

Type de données

date

Cataract Date
Description

Cataract Date

Type de données

date

Haemorrhagic cystitis, non infectious Date
Description

Haemorrhagic cystitis, non infectious Date

Type de données

date

ARDS, non infectious Date
Description

ARDS, non infectious Date

Type de données

date

Multiorgan failure, non infectious Date
Description

Multiorgan failure, non infectious Date

Type de données

date

HSCT-associated microangiopathy Date
Description

HSCT-associated microangiopathy Date

Type de données

date

Renal failure requiring dialysis Date
Description

Renal failure requiring dialysis Date

Type de données

date

Haemolytic anaemia due to blood group Date
Description

Haemolytic anaemia due to blood group Date

Type de données

date

Aseptic bone necrosis Date
Description

Aseptic bone necrosis Date

Type de données

date

Date of Other type of NON INFECTION RELATED COMPLICATIONS
Description

Date of Other type of NON INFECTION RELATED COMPLICATIONS

Type de données

date

Graft loss
Description

GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM

Type de données

text

Alias
UMLS CUI [1]
C0877042
Overall chimaerism
Description

Overall chimaerism

Type de données

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

Type de données

date

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

Identification

Type de données

text

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

Number in the infusion order

Type de données

text

Alias
UMLS CUI [1]
C0237753
Number in the infusion order
Description

Number in the infusion order

Type de données

integer

Cell type on which test was performed % Donor cells B-Cells
Description

Cell type on which test was performed

Type de données

integer

Unités de mesure
  • %
Alias
UMLS CUI [1]
C0004561
Test used:
Description

Laboratory tests

Type de données

text

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

Specification other labaratory tests

Type de données

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

Type de données

text

Date of Diagnosis
Description

Date of Diagnosis

Type de données

date

Alias
UMLS CUI [1]
C2316983
Diagnosis:
Description

Diagnosis

Type de données

text

Diagnosis, other:
Description

Other diagnosis

Type de données

text

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

ADDITIONAL THERAPIES SINCE LAST FOLLOW UP

Treatment given since last report
Description

Additional treatment

Type de données

text

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

Treatment given since last report

Type de données

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

Type de données

integer

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

Disease status before this cellular therapy

Type de données

text

If yes: Type of cells
Description

Type of cells

Type de données

integer

Alias
UMLS CUI [1]
C0302189
If other
Description

Type of cells

Type de données

text

Chronological number of this cell therapy for this patient
Description

Chronological number

Type de données

float

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

Nucleated cells

Type de données

integer

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

CD 34+

Type de données

text

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

CD 3+

Type de données

text

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

All cells

Type de données

text

Alias
UMLS CUI [1]
C0007584
Indication
Description

Cell therapy indication

Type de données

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

Type de données

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

Type de données

text

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

Disease treatment

Type de données

integer

Alias
UMLS CUI [1]
C0087111
Date started
Description

Datestarted

Type de données

date

Overall main reason
Description

Overall main reason

Type de données

text

Of Other, please specify
Description

Overall main reason

Type de données

text

Drugs
Description

Drugs

Type de données

text

If yes, mark appropriate box
Description

Drugs

Type de données

text

Total lymph node (TLI)
Description

Irradiation (radiotherapy) Site

Type de données

text

Craniospinal
Description

Irradiation (radiotherapy9 Site

Type de données

text

Other modality
Description

Lymphocytopheresis

Type de données

text

if other please specify
Description

Other modality

Type de données

text

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

Type de données

text

Date First Noted (mm-dd-yyyy)
Description

EventDiseaseResponseDate

Type de données

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0871261
UMLS CUI [1,3]
C0441471
UMLS CUI [1,4]
C0012634
Number of relapses/progressions since last HSCT
Description

Number of relapses/progressions since last HSCT

Type de données

float

Number of relapses/progressions since last HSCT
Description

Number of relapses/progressions since last HSCT

Type de données

integer

LAST DISEASE AND PATIENT STATUS
Description

LAST DISEASE AND PATIENT STATUS

Scripps neurological rating scale Score
Description

Scripps neurological rating scale

Type de données

float

Scripps neurological rating scale Score
Description

Scripps neurological rating scale

Type de données

text

Kurtze functional systems Overall score
Description

Kurtze functional systems

Type de données

float

Kurtze functional systems
Description

Kurtze functional systems

Type de données

text

Kurtze Expanded Disability Status Scale (EDSS)
Description

Kurtze Expanded Disability Status

Type de données

float

Kurtze Expanded Disability Status
Description

Kurtze Expanded Disability Status

Type de données

text

Composite Scale Score
Description

Composite Scale

Type de données

float

Composite Scale
Description

Composite Scale

Type de données

text

MRI BRAIN SCAN DONE
Description

MRI BRAIN SCAN DONE

Type de données

text

Date of most recent MRI scan of brain
Description

Date of most recent MRI scan of brain

Type de données

date

Results, Are new lesions present on the MRI?
Description

Results

Type de données

text

If yes Indicate new lesions present
Description

New lesions present on the MRI?

Type de données

text

Has patient or partner become pregnant after this HSCT?
Description

Conception

Type de données

text

Alias
UMLS CUI [1]
C0032961
Survival Status
Description

Survival Status

Type de données

integer

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

Performance score

Type de données

integer

Alias
UMLS CUI [1]
C1518965
Score
Description

Performance score

Type de données

integer

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

Cause of death

Type de données

integer

Alias
UMLS CUI [1]
C0007465
HSCT related cause
Description

HSCT related cause

Type de données

integer

ADDITIONAL NOTES IF APPLICABLE
Description

ADDITIONAL NOTES IF APPLICABLE

COMMENTS
Description

COMMENTS

Type de données

text

Identification
Description

Identification

Type de données

text

Alias
UMLS CUI [1]
C0205396

Similar models

15pp EBMT Multiple Sclerosis13MS

Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
Item Group
GENERAL INFORMATION Team
EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
text
C2348585 (UMLS CUI [1])
Klinik
Item
Hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
text
Contact person
Item
Name of contact person
text
C0337611 (UMLS CUI [1])
Patient phone number
Item
Telephone
text
C1515258 (UMLS CUI [1])
ContactPersonFaxNumber
Item
Fax
text
C0237753 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0337611 (UMLS CUI [1,3])
C0085205 (UMLS CUI [1,4])
ContactPersonE-mailText
Item
E-mail
text
C1527021 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
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])
Code List
Patient following national / international study / trial
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Name of study / trial
Item
Name of study / trial
text
Item Group
PATIENT
Unique Identification Code (UIC)
Item
To be entered only if patient previously reported
text
C2348585 (UMLS CUI [1])
Hospital Unique Patient Number or Code
Item
Hospital Unique Patient Number or Code
text
C1827636 (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])
Item
Sex
text
C0079399 (UMLS CUI [1])
Code List
Sex
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
Item
Rh factor
integer
Code List
Rh factor
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
Item Group
DISEASE
Date of Diagnosis
Item
Date of Diagnosis
date
C2316983 (UMLS CUI [1])
Item
Check the disease for which this transplant was performed
text
C0277554 (UMLS CUI [1])
Code List
Check the disease for which this transplant was performed
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
CL Item
Secondary Acute Leukaemia (do not use if transformed from MDS/MPN) (Secondary Acute Leukaemia (do not use if transformed from MDS/MPN))
CL Item
Chronic Leukaemia (Chronic Leukaemia)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
CL Item
Lymphoma (Lymphoma)
CL Item
Non Hodgkin (Non Hodgkin)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
CL Item
Solid Tumour (Solid Tumour)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
CL Item
MDS (MDS)
CL Item
MD/ MPN (MD/ MPN)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
CL Item
Inherited disorders (Inherited disorders)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
CL Item
Metabolic disorders (Metabolic disorders)
CL Item
Histiocytic disorders (Histiocytic disorders)
CL Item
Autoimmune disease (Autoimmune disease)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
CL Item
Systemic Lupus (Systemic Lupus)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
CL Item
Haemoglobinopathiy (Haemoglobinopathiy)
CL Item
Other diagnosis (Other diagnosis)
Primary Disease Diagnosis
Item
If other diagnosis, specify:
text
C0277554 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item Group
MULTIPLE SCLEROSIS
Neurologist Name
Item
Neurologist Name
text
Address
Item
Address
text
Fax
Item
Fax
text
C1549619 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
Email
Item
Email
text
C0013849 (UMLS CUI [1])
Item Group
INITIAL DIAGNOSIS
Item
has the information requested in this section been submitted with a previous HSCT registration?
text
C1514821 (UMLS CUI [1])
Code List
has the information requested in this section been submitted with a previous HSCT registration?
CL Item
Yes: go to `Pre-HSCT treatment` (Yes: go to `Pre-HSCT treatment`)
CL Item
No: Proceed with this section (No: Proceed with this section)
Item
Did the patient meet the Poser criteria for clinically-definite Multiple Sclerosis? (Two attacks and clinical evidence of two separate lesions OR Two attacks; clinical evidence of one lesion and paraclinical evidence of another, separate lesion)
integer
Code List
Did the patient meet the Poser criteria for clinically-definite Multiple Sclerosis? (Two attacks and clinical evidence of two separate lesions OR Two attacks; clinical evidence of one lesion and paraclinical evidence of another, separate lesion)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Did the patient meet the criteria for laboratory-supported Multiple Sclerosis?
integer
Code List
Did the patient meet the criteria for laboratory-supported Multiple Sclerosis?
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item Group
FIRST LINE THERAPIES
Item
THERAPIES
integer
Code List
THERAPIES
CL Item
no Proceed to ”Date of HSCT” (1)
CL Item
yes (2)
THERAPIES Date started
Item
THERAPIES Date started
date
Item
Drugs
integer
Code List
Drugs
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
if drugs, mark appropriate box
text
Code List
if drugs, mark appropriate box
CL Item
Cyclophosphamide (1)
CL Item
Mitoxantrone (2)
CL Item
Anti-lymphocyte antibodies/globulins (ALG) (3)
CL Item
Corticosteroids (4)
CL Item
Chronic low dose REGIMEN (5)
CL Item
Pulse high dose (6)
CL Item
Azathioprine (7)
CL Item
Cop-I (8)
CL Item
alphainterferon (9)
CL Item
beta-interferon (10)
Item
Irradiation (radiotherapy) Site
integer
Code List
Irradiation (radiotherapy) Site
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Irradiation (radiotherapy) Site
integer
Code List
Irradiation (radiotherapy) Site
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Other modality Lymphocytopheresis
integer
Code List
Other modality Lymphocytopheresis
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Other modality Plasmapheresis
integer
Code List
Other modality Plasmapheresis
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Other, specify modality
Item
Other, specify modality
text
Item Group
DATE OF HSCT
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
TRANSPLANT TYPE
integer
Code List
TRANSPLANT TYPE
CL Item
Allogeneic (1)
CL Item
Autologous: Mobilised (2)
Item
if Transplat type Autologous: Mobilised
text
Code List
if Transplat type Autologous: Mobilised
CL Item
no (1)
CL Item
yes (2)
Date of Autologous: Mobilised
Item
Date of Autologous: Mobilised
date
Item Group
STATUS OF DISEASE AT MOBILISATION
Scripps neurological rating scale
Item
Scripps neurological rating scale Score
integer
Item
Scripps neurological rating scale
integer
Code List
Scripps neurological rating scale
CL Item
unknown (1)
CL Item
Not evaluated (2)
Kurtze functional systems
Item
Kurtze functional systems Overall score
text
Item
Kurtze functional systems
integer
Code List
Kurtze functional systems
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Kurtze Expanded Disability Status
Item
Kurtze Expanded Disability Status Scale (EDSS)
text
Item
Kurtze Expanded Disability Status
integer
Code List
Kurtze Expanded Disability Status
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Composite Scale Score
Item
Composite Scale Score
text
Item
Composite Scale
integer
Code List
Composite Scale
CL Item
unknown (1)
CL Item
not evaluated (2)
Item
MRI BRAIN SCAN DONE
text
Code List
MRI BRAIN SCAN DONE
CL Item
Not done prior to mobilisation (Not done prior to mobilisation)
CL Item
Yes (Yes)
CL Item
Date unknown (Date unknown)
Date of most recent MRI scan of brain
Item
Date of most recent MRI scan of brain
date
Item
Gadolinium-enhancing lesions present Results
text
Code List
Gadolinium-enhancing lesions present Results
CL Item
Number (Number)
CL Item
None (None)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Gadolinium-enhancing lesions present Number
Item
If Gadolinium-enhancing lesions present
integer
Item Group
STATUS OF DISEASE AT HSCT
Item
DISEASE COURSE
text
Code List
DISEASE COURSE
CL Item
Progressive relapsing (malignant) (Progressive relapsing (malignant))
CL Item
Primary progressive (Primary progressive)
CL Item
Secondary progressive (may have had previous Relapsing/Remitting) (Secondary progressive (may have had previous Relapsing/Remitting))
CL Item
Relapsing/Remitting (Relapsing/Remitting)
CL Item
Not evaluable, explain (Not evaluable, explain)
DISEASE COURSE
Item
If DISEASE COURSE not evaluable please explain
text
Item
Did the patient progress during the 2-years prior to mobilisation/HSCT?
text
Code List
Did the patient progress during the 2-years prior to mobilisation/HSCT?
CL Item
no  (no )
CL Item
yes (yes)
CL Item
unknown (unknown)
number of relapses/progressions
Item
If the patient progress during the 2-years prior to mobilisation/HSCT?
integer
Scripps neurological rating scale
Item
Scripps neurological rating scale Score
text
Item
Scripps neurological rating scale
integer
Code List
Scripps neurological rating scale
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Kurtze functional systems
Item
Kurtze functional systems Overall score
text
Item
Kurtze functional systems
integer
Code List
Kurtze functional systems
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Kurtze Expanded Disability Status
Item
Kurtze Expanded Disability Status Scale (EDSS)
text
Item
Kurtze Expanded Disability Status
integer
Code List
Kurtze Expanded Disability Status
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Composite Scale
Item
Composite Scale Score
text
Item
Composite Scale
integer
Code List
Composite Scale
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Item
MRI BRAIN SCAN DONE
text
Code List
MRI BRAIN SCAN DONE
CL Item
Not done prior to HSCT (Not done prior to HSCT)
CL Item
Yes: (Yes:)
Date of most recent MRI scan of brain
Item
If MRI BRAIN SCAN DONE Date of most recent MRI scan of brain:
date
Item
Date of most recent MRI scan of brain:
integer
Code List
Date of most recent MRI scan of brain:
CL Item
Date unknown (1)
Item
Gadolinium-enhancing lesions present
text
Code List
Gadolinium-enhancing lesions present
CL Item
Number (Number)
CL Item
None (None)
CL Item
Unknown (Unknown)
Gadolinium-enhancing lesions present
Item
Gadolinium-enhancing lesions present
text
Item Group
ADDITIONAL TREATMENT POST-HSCT
Item
ADDITIONAL TREATMENT FOR MULTIPLE SCLERORIS
text
Code List
ADDITIONAL TREATMENT FOR MULTIPLE SCLERORIS
CL Item
no (no)
CL Item
yes (yes)
Date started if patient receive additional treatment post-HSCT
Item
Date started if patient receive additional treatment post-HSCT
date
Item
Overall main reason
integer
Code List
Overall main reason
CL Item
Relapse/progression (1)
CL Item
Continued from pre-HSCT (2)
CL Item
unknow (3)
CL Item
Planned per protocol (4)
CL Item
Other, specify (5)
Overall main reason
Item
If other, please specify
text
Item
Drugs
text
Code List
Drugs
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
If drugs
integer
Code List
If drugs
CL Item
Cyclophosphamide (1)
CL Item
Mitoxantrone (2)
CL Item
Anti-lymphocyte antibodies (3)
CL Item
Corticosteroids (4)
CL Item
Chronic low dose (5)
CL Item
REGIMEN Pulse high dose (6)
CL Item
Azathioprine (7)
CL Item
Cop-I (8)
CL Item
Alpha-interferon (9)
CL Item
Beta-interferon (10)
Item
Irradiation (radiotherapy) Total lymph node (TLI)
integer
Code List
Irradiation (radiotherapy) Total lymph node (TLI)
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
Craniospinal
integer
Code List
Craniospinal
CL Item
no  (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Other modality Lymphocytopheresis
integer
Code List
Other modality Lymphocytopheresis
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Other modality Plasmapheresis
integer
Code List
Other modality Plasmapheresis
CL Item
no  (1)
CL Item
yes (2)
CL Item
unknown (3)
Other modality
Item
If other modality please specify
text
Item Group
STATUS AT 100 DAYS POST-HSCT
DATE OF EVALUATION
Item
DATE OF EVALUATION
date
CLINICAL EVALUATION Scripps neurological rating scale
Item
CLINICAL EVALUATION Scripps neurological rating scale
float
Item
CLINICAL EVALUATION Scripps neurological rating scale
integer
Code List
CLINICAL EVALUATION Scripps neurological rating scale
CL Item
Unknown  (1)
CL Item
Not evaluated (2)
CLINICAL EVALUATION Kurtze functional systems
Item
CLINICAL EVALUATION Kurtze functional systems
float
Item
CLINICAL EVALUATION Kurtze functional systems
integer
Code List
CLINICAL EVALUATION Kurtze functional systems
CL Item
unknown (1)
CL Item
not evaluated (2)
CLINICAL EVALUATION Kurtze Expanded Disability Status
Item
CLINICAL EVALUATION Kurtze Expanded Disability Status
float
Item
CLINICAL EVALUATION Kurtze Expanded Disability Status
integer
Code List
CLINICAL EVALUATION Kurtze Expanded Disability Status
CL Item
Unknown (1)
CL Item
Not evaluated (2)
CLINICAL EVALUATION Composite Scale
Item
CLINICAL EVALUATION Composite Scale
float
Item
CLINICAL EVALUATION Composite Scale
integer
Code List
CLINICAL EVALUATION Composite Scale
CL Item
Unknown (1)
CL Item
Not evaluated (2)
Item
MRI BRAIN SCAN DONE
text
Code List
MRI BRAIN SCAN DONE
CL Item
Not done within 100 days from HSCT (Not done within 100 days from HSCT)
CL Item
Yes (Yes)
CL Item
Date unknown (Date unknown)
MRI BRAIN SCAN DONE
Item
If MRI BRAIN SCAN DONE Date of most recent MRI scan of brain
date
Item
Results
integer
Code List
Results
CL Item
No (1)
CL Item
Yes, Indicate new lesions present (2)
CL Item
Unknown (3)
Item
If results Indicate new lesions present
integer
Code List
If results Indicate new lesions present
CL Item
Gadolinium-enhancing (1)
CL Item
Unenhancing (2)
CL Item
Both (3)
CL Item
Unknown (4)
Item Group
FORMS TO BE FILLED IN
Item
Type of Transplant
text
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
Code List
Type of Transplant
CL Item
AUTOgraft (proceed to Autograft form) (AUTOgraft (proceed to Autograft form))
CL Item
ALLOgraft or Syngeneic graft (proceed to Allograft form) (ALLOgraft or Syngeneic graft (proceed to Allograft form))
CL Item
Other (contact the EBMT Central Registry for instructions) (Other (contact the EBMT Central Registry for instructions))
TYPE OF TRANSPLANT
Item
If Other Type of Transplant please specify
text
Item Group
FOLLOW UP MULTIPLE SCLEROSIS
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])
Code List
Patient following national / international study / trial
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Name of study / trial
Item
Name of study / trial
text
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])
PersonBirthDate
Item
Date of Birth
date
C0011008 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0005615 (UMLS CUI [1,3])
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
Item Group
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Item
Acute Graft versus Host Disease (aGvHD) - Maximum grade
text
C0441799 (UMLS CUI [1])
Code List
Acute Graft versus Host Disease (aGvHD) - Maximum grade
CL Item
grade I (grade I)
CL Item
grade II (grade II)
CL Item
grade III (grade III)
CL Item
grade IV (grade IV)
CL Item
not evaluated (not evaluated)
CL Item
grade 0 (absent) (grade 0 (absent))
Item
If present
integer
Code List
If present
CL Item
New onset (1)
CL Item
Recurrent (2)
CL Item
Persistent (3)
Item
Reason Maximum grade
integer
Code List
Reason Maximum grade
CL Item
Tapering (1)
CL Item
DLI (2)
CL Item
Unexplained (3)
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
Code List
Date onset of this episode
CL Item
Not applicable (1)
Item
Stage skin
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
Code List
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
Stage liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
Code List
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
Stage gut
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
Code List
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])
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])
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])
Code List
cGvHD grade
CL Item
limited (1)
CL Item
Extensive (2)
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Code List
Organs affected
CL Item
Skin (1)
CL Item
Gut (2)
CL Item
Liver (3)
CL Item
Mouth (4)
CL Item
Eyes (5)
CL Item
Lung (6)
CL Item
Other, specify (7)
CL Item
Unknown (8)
Organs affected
Item
If other organs affected, please specify
text
cGvHD Resolved: Date of resolution
Item
cGvHD Resolved: Date of resolution
date
Item Group
OTHER COMPLICATIONS SINCE LAST REPORT
Item
INFECTION RELATED COMPLICATIONS
integer
Code List
INFECTION RELATED COMPLICATIONS
CL Item
No complications (1)
CL Item
Yes (2)
Bacteremia / fungemia / viremia / parasites Pathogen
Item
Bacteremia / fungemia / viremia / parasites Pathogen
text
Date Bacteremia / fungemia / viremia / parasites
Item
Date Bacteremia / fungemia / viremia / parasites
date
Pathogen Septic shock
Item
Pathogen Septic shock
text
Date Septic shock
Item
Date Septic shock
date
Pathogen ARDS
Item
Pathogen ARDS
text
Date ARDS
Item
Date ARDS
date
Pathogen Multiorgan failure due to infection
Item
Pathogen Multiorgan failure due to infection
text
Date Multiorgan failure due to infection
Item
Date Multiorgan failure due to infection
date
Pathogen Pneumonia
Item
Pathogen Pneumonia
text
Date Pneumonia
Item
Date Pneumonia
date
Pathogen Hepatitis
Item
Pathogen Hepatitis
text
Date Hepatitis
Item
Date Hepatitis
date
Pathogen CNS infection
Item
Pathogen CNS infection
text
Date CNS infection
Item
Date CNS infection
date
Pathogen Gut infection
Item
Pathogen Gut infection
text
Date Gut infection
Item
Date Gut infection
date
Pathogen Skin infection
Item
Pathogen Skin infection
text
Date Skin infection
Item
Date Skin infection
date
Pathogen Cystitis
Item
Pathogen Cystitis
text
Date Cystitis
Item
Date Cystitis
date
Pathogen Retinitis
Item
Pathogen Retinitis
text
Date Retinitis
Item
Date Retinitis
date
Other pathogen specified
Item
Other pathogen specified
text
Date Other Pathogen
Item
Date Other Pathogen
date
Item
NON INFECTION RELATED COMPLICATIONS
integer
Code List
NON INFECTION RELATED COMPLICATIONS
CL Item
No complications (1)
CL Item
Yes (2)
Item
Specify: Idiopathic pneumonia syndrome
text
C1504431 (UMLS CUI [1])
Code List
Specify: Idiopathic pneumonia syndrome
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Specify: VOD
integer
C0948441 (UMLS CUI [1])
Code List
Specify: VOD
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Specify: Cataract
text
C0086543 (UMLS CUI [1])
Code List
Specify: Cataract
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
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])
Code List
Specify: ARDS, non infectious
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Multiorgan failure, non infectious
text
Code List
Multiorgan failure, non infectious
CL Item
yes  (yes )
CL Item
no  (no )
CL Item
unknown (unknown)
Item
Specify: HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
Code List
Specify: HSCT-associated microangiopathy
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Specify: Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
Code List
Specify: Renal failure requiring dialysis
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Specify: Haemolytic anaemia due to blood group
text
C0002878 (UMLS CUI [1])
Code List
Specify: Haemolytic anaemia due to blood group
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Specify: Aseptic bone necrosis
text
C0158452 (UMLS CUI [1])
Code List
Specify: Aseptic bone necrosis
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Other type of NON INFECTION RELATED COMPLICATIONS
Item
Other type of NON INFECTION RELATED COMPLICATIONS, please specify
text
Idiopathic pneumonia syndrome Date
Item
Idiopathic pneumonia syndrome Date
date
VOD Date
Item
VOD Date
date
Cataract Date
Item
Cataract Date
date
Haemorrhagic cystitis, non infectious Date
Item
Haemorrhagic cystitis, non infectious Date
date
ARDS, non infectious Date
Item
ARDS, non infectious Date
date
Multiorgan failure, non infectious Date
Item
Multiorgan failure, non infectious Date
date
HSCT-associated microangiopathy Date
Item
HSCT-associated microangiopathy Date
date
Renal failure requiring dialysis Date
Item
Renal failure requiring dialysis Date
date
Haemolytic anaemia due to blood group Date
Item
Haemolytic anaemia due to blood group Date
date
Aseptic bone necrosis Date
Item
Aseptic bone necrosis Date
date
Date of Other type of NON INFECTION RELATED COMPLICATIONS
Item
Date of Other type of NON INFECTION RELATED COMPLICATIONS
date
Item
Graft loss
text
C0877042 (UMLS CUI [1])
Code List
Graft loss
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Not evaluated (Not evaluated)
Item
Overall chimaerism
text
C0333678 (UMLS CUI [1])
Code List
Overall chimaerism
CL Item
95%) (Full (donor >)
CL Item
Mixed (partial) (Mixed (partial))
CL Item
95%) (Autologuos reconstitution (recipient >)
CL Item
Aplasia (Aplasia)
CL Item
Not evaluated (Not evaluated)
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
Number in the infusion order
integer
Code List
Number in the infusion order
CL Item
N/A (1)
Item
Cell type on which test was performed % Donor cells B-Cells
integer
C0004561 (UMLS CUI [1])
Code List
Cell type on which test was performed % Donor cells B-Cells
CL Item
BM (1)
CL Item
PB mononuclear cells (PBMC) (2)
CL Item
T-cell (3)
CL Item
B-cells (4)
CL Item
Red blood cells (5)
CL Item
Monocytes (6)
CL Item
PMNs (neutrophils) (7)
CL Item
Lymphocytes, NOS (8)
CL Item
Myeloid cells, NOS (9)
CL Item
Other, specify (10)
Item
Test used:
text
C0022885 (UMLS CUI [1])
Code List
Test used:
CL Item
FISH (FISH)
CL Item
Molecular (Molecular)
CL Item
Cytogenetic (Cytogenetic)
CL Item
ABO group (ABO group)
CL Item
Other (Other)
CL Item
unknown (unknown)
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
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:
text
Code List
Diagnosis:
CL Item
AML (AML)
CL Item
MDS (MDS)
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
CL Item
Other (Other)
Other diagnosis
Item
Diagnosis, other:
text
C0205394 (UMLS CUI [1])
Item Group
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Item
Treatment given since last report
text
C1706712 (UMLS CUI [1])
Code List
Treatment given since last report
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
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])
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
text
Code List
Disease status before this cellular therapy
CL Item
CR (CR)
CL Item
Not in CR (Not in CR)
CL Item
Not evaluated (Not evaluated)
Item
If yes: Type of cells
integer
C0302189 (UMLS CUI [1])
Code List
If yes: Type of cells
CL Item
Donor lymphocyte infusion (DLI) (1)
CL Item
Mesenchymal cells (2)
CL Item
Other (3)
CL Item
Unknown (4)
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])
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])
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])
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])
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
Indication
integer
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
Code List
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])
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])
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
Item
Overall main reason
text
Code List
Overall main reason
CL Item
Relapse/progression (Relapse/progression)
CL Item
Continued from pre-HSCT (Continued from pre-HSCT)
CL Item
unknow (unknow)
CL Item
Planned per protocol (Planned per protocol)
CL Item
Other (Other)
Overall main reason
Item
Of Other, please specify
text
Item
Drugs
text
Code List
Drugs
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
If yes, mark appropriate box
text
Code List
If yes, mark appropriate box
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mitoxantron (Mitoxantron)
CL Item
Anti-lymphocyte antibodies (Anti-lymphocyte antibodies)
CL Item
Corticosteroids (Corticosteroids)
CL Item
Chronic low dose (Chronic low dose)
CL Item
Pulse high dose (Pulse high dose)
CL Item
Azathioprine (Azathioprine)
CL Item
Cop-I (Cop-I)
CL Item
Alpha interferon (Alpha interferon)
CL Item
Beta Interferon (Beta Interferon)
Item
Total lymph node (TLI)
text
Code List
Total lymph node (TLI)
CL Item
NO (NO)
CL Item
YES (YES)
CL Item
UNKNOWN (UNKNOWN)
Item
text
Code List
Craniospinal
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
Other modality
text
Code List
Other modality
CL Item
no (no)
CL Item
yes  (yes )
CL Item
unknown (unknown)
Other modality
Item
if other please specify
text
Item Group
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Item
EVIDENCE OF DISEASE ACTIVITY
text
Code List
EVIDENCE OF DISEASE ACTIVITY
CL Item
Previously reported (Previously reported)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Continuous worsening since HSCT (Continuous worsening since HSCT)
EventDiseaseResponseDate
Item
Date First Noted (mm-dd-yyyy)
date
C0011008 (UMLS CUI [1,1])
C0871261 (UMLS CUI [1,2])
C0441471 (UMLS CUI [1,3])
C0012634 (UMLS CUI [1,4])
Number of relapses/progressions since last HSCT
Item
Number of relapses/progressions since last HSCT
float
Item
Number of relapses/progressions since last HSCT
integer
Code List
Number of relapses/progressions since last HSCT
CL Item
unknown (1)
Item Group
LAST DISEASE AND PATIENT STATUS
Scripps neurological rating scale
Item
Scripps neurological rating scale Score
float
Item
Scripps neurological rating scale Score
text
Code List
Scripps neurological rating scale Score
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
Kurtze functional systems
Item
Kurtze functional systems Overall score
float
Item
Kurtze functional systems
text
Code List
Kurtze functional systems
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
Kurtze Expanded Disability Status
Item
Kurtze Expanded Disability Status Scale (EDSS)
float
Item
Kurtze Expanded Disability Status
text
Code List
Kurtze Expanded Disability Status
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
Composite Scale
Item
Composite Scale Score
float
Item
Composite Scale
text
Code List
Composite Scale
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
Item
MRI BRAIN SCAN DONE
text
Code List
MRI BRAIN SCAN DONE
CL Item
Not done (Not done)
CL Item
Yes (Yes)
Date of most recent MRI scan of brain
Item
Date of most recent MRI scan of brain
date
Item
Results, Are new lesions present on the MRI?
text
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
Code List
If yes Indicate new lesions present
CL Item
Gadolinium-enhancing (Gadolinium-enhancing)
CL Item
Unenhancing (Unenhancing)
CL Item
Both (Both)
CL Item
Unknown (Unknown)
Item
Has patient or partner become pregnant after this HSCT?
text
C0032961 (UMLS CUI [1])
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])
Code List
Survival Status
CL Item
alive (0)
CL Item
dead (1)
Item
Performance score (if alive)
integer
C1518965 (UMLS CUI [1])
Code List
Performance score (if alive)
CL Item
Karnofsky (1)
CL Item
Lansky (2)
Item
Score
integer
C1518965 (UMLS CUI [1])
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])
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
Code List
HSCT related cause
CL Item
GvHD (1)
CL Item
Interstitial pneumonitis (2)
CL Item
Pulmonary toxicity (3)
CL Item
Infection bacterial (4)
CL Item
Infection viral (5)
CL Item
Infection fungal (6)
CL Item
Infection parasitic (7)
CL Item
Infection unknown (8)
CL Item
Rejection / poor graft function (9)
CL Item
Veno-occlusive disease (VOD) (10)
CL Item
Haemorrhage (11)
CL Item
Cardiac toxicity (12)
CL Item
Central nervous system toxicity (13)
CL Item
Gastro intestinal toxicity (14)
CL Item
Skin toxicity (15)
CL Item
Renal failure (16)
CL Item
Multiple organ failure (17)
CL Item
Other (18)
Item Group
ADDITIONAL NOTES IF APPLICABLE
COMMENTS
Item
COMMENTS
text
Identification
Item
Identification
text
C0205396 (UMLS CUI [1])

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