ID
14636
Description
DOCUMENTED PATHOGENS (Use this table for guidance on the pathogens of interest) 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, JJV-6, RSV, Other respiratory virus (influenza, parainfluenza, rhinovirus), Adenovirus, HBV, HCV, HIV, Papovavirus, Parvovirus, Other
Keywords
Versions (2)
- 4/25/16 4/25/16 -
- 7/9/16 7/9/16 -
Uploaded on
April 25, 2016
DOI
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License
Creative Commons BY-NC 3.0
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EBMT Inherited Disorders
16pp EBMT Inherited Disorders
- StudyEvent: ODM
Description
PATIENT
Description
Unique Identification Code (UIC)
Data type
text
Alias
- UMLS CUI [1]
- C2348585
Description
Hospital Unique Patient Number or Code
Data type
text
Alias
- UMLS CUI [1]
- C1827636
Description
Initials
Data type
text
Alias
- UMLS CUI [1]
- C2986440
Description
Date of birth
Data type
date
Alias
- UMLS CUI [1]
- C0421451
Description
Sex
Data type
text
Alias
- UMLS CUI [1]
- C0079399
Description
ABO Group
Data type
text
Description
Rh factor
Data type
integer
Alias
- UMLS CUI [1]
- C0035403
Description
DISEASE
Description
Date of Diagnosis
Data type
date
Alias
- UMLS CUI [1]
- C2316983
Description
Primary Disease Diagnosis
Data type
text
Alias
- UMLS CUI [1]
- C0277554
Description
Primary Disease Diagnosis
Data type
text
Description
SPECIFICATIONS OF THE DISEASE
Description
Previous HSCT registration
Data type
text
Alias
- UMLS CUI [1]
- C1514821
Description
CLASSIFICATION
Data type
integer
Description
SCID (Severe Combined Immune Deficiency)
Data type
integer
Description
SCID (Severe Combined Immune Deficiency)
Data type
text
Description
CID (Combined Immune Deficiency)
Data type
integer
Description
CID (Combined Immune Deficiency)
Data type
text
Description
Other primary immune deficiencies
Data type
integer
Description
Inherited disorders of metabolism
Data type
text
Description
Inherited disorders of metabolism
Data type
text
Description
Other inherited disorders
Data type
integer
Description
Stored material
Data type
integer
Description
Stored material
Data type
integer
Description
INHERITANCE
Data type
text
Description
CYTOGENETICS
Data type
integer
Description
Mutations
Data type
integer
Description
Description
Data type
text
Description
Description
Data type
text
Description
STATUS OF DISEASE AT HSCT
Description
Date of HSCT
Data type
date
Alias
- UMLS CUI [1]
- C2584899
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
HAEMATOLOGICAL VALUES
Data type
float
Description
T-CELL FUNCTION
Data type
integer
Description
T-CELL FUNCTION
Data type
integer
Description
T-CELL FUNCTION
Data type
integer
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
float
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
integer
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
float
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
integer
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
float
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
integer
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
float
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
integer
Description
IMMUNOGLOBULINS (B-CELL FUNCTION)
Data type
integer
Description
Antibody response
Data type
integer
Description
CLINICAL STATUS GENERAL MANIFESTATIONS
Data type
integer
Description
CLINICAL STATUS GENERAL MANIFESTATIONS
Data type
integer
Description
CLINICAL STATUS GENERAL MANIFESTATIONS
Data type
integer
Description
CLINICAL STATUS GENERAL MANIFESTATIONS
Data type
integer
Description
CLINICAL STATUS GENERAL MANIFESTATIONS
Data type
integer
Description
Infections
Data type
integer
Description
Septicemia
Data type
integer
Description
Septicemia
Data type
text
Description
Pulmonary
Data type
integer
Description
Meningeal
Data type
integer
Description
Skin infection
Data type
integer
Description
Skin infection
Data type
text
Description
Liver
Data type
integer
Description
Liver
Data type
text
Description
Bone or joints
Data type
integer
Description
Bone or joints
Data type
text
Description
Gut infection
Data type
integer
Description
Gut infection
Data type
text
Description
Undetermined
Data type
integer
Description
Undetermined
Data type
text
Description
Other infections
Data type
integer
Description
Other infections
Data type
text
Description
GVHD STATUS PRIOR TO HSCT
Data type
integer
Description
Manifestation
Data type
text
Description
Lymphadenopathy
Data type
text
Description
Cause of the GvHD
Data type
integer
Description
Maternal engraftment
Data type
float
Description
Test used
Data type
text
Description
Treatment
Data type
text
Description
NUMBER OF TRANSFUSIONS BEFORE HSCT
Data type
text
Description
NUMBER OF TRANSFUSIONS BEFORE HSCT
Data type
integer
Description
ADDITIONAL TREATMENT POST-HSCT
Description
BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT
Description
DISEASE STATUS AT 100 DAYS AFTER HSCT
Data type
integer
Description
Date of assessment
Data type
date
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
text
Description
T-cell Full
Data type
date
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
RECONSTITUTION CHIMAERISM (ENGRAFTMENT)
Data type
integer
Description
HAEMATOLOGICAL RECONSTITUTION
Data type
float
Description
HAEMATOLOGICAL RECONSTITUTION
Data type
float
Description
HAEMATOLOGICAL RECONSTITUTION
Data type
float
Description
HAEMATOLOGICAL RECONSTITUTION
Data type
float
Description
HAEMATOLOGICAL RECONSTITUTION
Data type
float
Description
IMMUNOLOGICAL RECONSTITUTION T-cells
Data type
integer
Description
IMMUNOLOGICAL RECONSTITUTION T-cells
Data type
integer
Description
B-cells
Data type
float
Description
B-cells
Data type
integer
Description
B-cells
Data type
float
Description
B-cells
Data type
integer
Description
B-cells
Data type
float
Description
B-cells
Data type
integer
Description
B-cells
Data type
float
Description
B-cells
Data type
integer
Description
Antibody production after vaccination
Data type
integer
Description
ON-GOING TREATMENT FOR RECONSTITUTION AT 100 DAYS
Data type
integer
Description
ON-GOING TREATMENT FOR RECONSTITUTION AT 100 DAYS
Data type
text
Description
Patient still receiving IV Immunoglobulins
Data type
text
Description
Growth factors (cytokines) administered to the patient?
Data type
text
Description
FORMS TO BE FILLED IN
Description
FOLLOW UP INHERITED DISORDERS
Description
Unique Identification Code (UIC)
Data type
text
Alias
- UMLS CUI [1]
- C2348585
Description
Date of this report
Data type
date
Alias
- UMLS CUI [1]
- C1302584
Description
Patient in Trial
Data type
integer
Alias
- UMLS CUI [1]
- C1997894
Description
Name of study / trial
Data type
text
Description
Hospital Unique Patient Number
Data type
text
Alias
- UMLS CUI [1]
- C2348585
Description
Initials
Data type
text
Alias
- UMLS CUI [1]
- C2986440
Description
PersonBirthDate
Data type
date
Alias
- UMLS CUI [1,1]
- C0011008
- UMLS CUI [1,2]
- C0027361
- UMLS CUI [1,3]
- C0005615
Description
Date of last HSCT for this patient
Data type
date
Alias
- UMLS CUI [1,1]
- C0472699
- UMLS CUI [1,2]
- C0011008
Description
PATIENT LAST SEEN
Description
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Description
aGvHD Grade
Data type
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C0441800
Description
ACUTE GRAFT VERSUS HOST DISEASE (AGVHD)
Data type
integer
Description
ACUTE GRAFT VERSUS HOST DISEASE (AGVHD)
Data type
integer
Description
Date onset of this episode
Data type
date
Measurement units
- yyyy/mm/dd
Alias
- UMLS CUI [1]
- C0574845
Description
Date onset of this episode
Data type
integer
Description
aGvHD Stage Skin
Data type
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C1306673
Description
aGvHD Stage liver
Data type
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C0023884
Description
aGvHD stage gut
Data type
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C0021853
Description
aGvHD Resolution
Data type
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1514893
Description
Date of Resolution
Data type
date
Alias
- UMLS CUI [1]
- C0011008
Description
Chronic Graft versus Host Disease (cGvHD)
Data type
text
Description
Date of onset
Data type
date
Alias
- UMLS CUI [1]
- C0574845
Description
cGvHD grade
Data type
text
Alias
- UMLS CUI [1,1]
- C0867389
- UMLS CUI [1,2]
- C0441799
Description
Organs affected
Data type
integer
Alias
- UMLS CUI [1]
- C0449642
Description
Organs affected
Data type
text
Description
Date of Resolution
Data type
date
Alias
- UMLS CUI [1,1]
- C1514893
- UMLS CUI [1,2]
- C0011008
Description
OTHER COMPLICATIONS SINCE LAST REPORT
Description
Infection related complications
Data type
boolean
Alias
- UMLS CUI [1,1]
- C0009450
- UMLS CUI [1,2]
- C0009566
Description
Bacteremia / fungemia / viremia / parasites
Data type
text
Description
Septic shock
Data type
text
Description
ARDS
Data type
text
Description
Multiorgan failure due to infection
Data type
text
Description
Pneumonia
Data type
text
Description
Hepatitis
Data type
text
Description
CNS infection
Data type
text
Description
Gut infection
Data type
text
Description
Skin infection
Data type
text
Description
Cystitis
Data type
text
Description
Retinitis
Data type
text
Description
Other
Data type
text
Description
Bacteremia / fungemia / viremia / parasites
Data type
text
Description
Septic shock
Data type
text
Description
ARDS
Data type
text
Description
Multiorgan failure due to infection
Data type
text
Description
Pneumonia
Data type
text
Description
Hepatitis
Data type
text
Description
CNS infection
Data type
text
Description
Gut infection
Data type
text
Description
Skin infection
Data type
text
Description
Cystitis
Data type
text
Description
Retinitis
Data type
text
Description
Other
Data type
text
Description
Non infection related complications
Data type
boolean
Alias
- UMLS CUI [1]
- C0009566
Description
Idiopathic pneumonia syndrome
Data type
text
Alias
- UMLS CUI [1]
- C1504431
Description
Idiopathic pneumonia syndrome
Data type
date
Description
VOD
Data type
text
Alias
- UMLS CUI [1]
- C0948441
Description
VOD
Data type
date
Description
Cataract
Data type
text
Alias
- UMLS CUI [1]
- C0086543
Description
Cataract
Data type
date
Description
Haemorrhagic cystitis, non infectious
Data type
text
Alias
- UMLS CUI [1]
- C0085692
Description
Haemorrhagic cystitis, non infectious
Data type
date
Description
ARDS, non infectious
Data type
text
Alias
- UMLS CUI [1]
- C0035222
Description
ARDS, non infectious
Data type
date
Description
Multiorgan failure, non infectious
Data type
integer
Description
Multiorgan failure, non infectious
Data type
date
Description
HSCT-associated microangiopathy
Data type
text
Alias
- UMLS CUI [1]
- C0155765
Description
HSCT-associated microangiopathy
Data type
date
Description
Renal failure requiring dialysis
Data type
text
Alias
- UMLS CUI [1]
- C0035078
Description
Renal failure requiring dialysis
Data type
date
Description
Haemolytic anaemia due to blood group
Data type
text
Alias
- UMLS CUI [1]
- C0002878
Description
Haemolytic anaemia due to blood group
Data type
date
Description
Aseptic bone necrosis
Data type
text
Alias
- UMLS CUI [1]
- C0158452
Description
Aseptic bone necrosis
Data type
date
Description
Other
Data type
text
Alias
- UMLS CUI [1]
- C0205394
Description
GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM
Description
Graft loss
Data type
text
Alias
- UMLS CUI [1]
- C0877042
Description
Overall chimaerism
Data type
text
Alias
- UMLS CUI [1]
- C0333678
Description
Date of Test
Data type
date
Alias
- UMLS CUI [1,1]
- C0024671
- UMLS CUI [1,2]
- C0011008
Description
Identification
Data type
text
Alias
- UMLS CUI [1]
- C1718162
Description
Number in the infusion order
Data type
text
Alias
- UMLS CUI [1]
- C0237753
Description
Bone marrow
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0005953
Description
PB mononuclear cells (PBMC)
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C1321301
Description
T-Cells
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0039194
Description
B-Cells
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0004561
Description
Red blood cells
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0014772
Description
Monocytes
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0026473
Description
PMNs (neutrophils)
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0200633
Description
Lymphocytes, NOS
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0024264
Description
Myeloid cells, NOS
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1]
- C0887899
Description
Other cell type - value
Data type
float
Measurement units
- %
Alias
- UMLS CUI [1,1]
- C0449475
- UMLS CUI [1,2]
- C1522609
Description
Laboratory tests
Data type
integer
Alias
- UMLS CUI [1]
- C0022885
Description
Specification other labaratory tests
Data type
text
Alias
- UMLS CUI [1,1]
- C0022885
- UMLS CUI [1,2]
- C2348235
Description
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Data type
integer
Description
Date of Diagnosis
Data type
date
Alias
- UMLS CUI [1]
- C2316983
Description
Diagnosis
Data type
integer
Alias
- UMLS CUI [1]
- C0011900
Description
Diagnose
Data type
text
Alias
- UMLS CUI [1]
- C0011900
Description
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Description
Additional treatment
Data type
text
Alias
- UMLS CUI [1]
- C1706712
Description
Treatment given since last report
Data type
date
Description
Cellular therapy
Data type
integer
Alias
- UMLS CUI [1]
- C0302189
Description
Cellular therapy
Data type
integer
Description
Type of cells
Data type
integer
Alias
- UMLS CUI [1]
- C0302189
Description
Type of cells
Data type
text
Description
Nucleated cells
Data type
integer
Measurement units
- 10^8/kg
Alias
- UMLS CUI [1]
- C1180059
Description
CD 34+
Data type
text
Alias
- UMLS CUI [1]
- C3538723
Description
CD 3+
Data type
text
Alias
- UMLS CUI [1]
- C3542405
Description
All cells
Data type
integer
Measurement units
- x10^6/kg
Alias
- UMLS CUI [1]
- C0007584
Description
Chronological number
Data type
float
Alias
- UMLS CUI [1]
- C2348184
Description
Indication
Data type
text
Alias
- UMLS CUI [1,1]
- C3146298
- UMLS CUI [1,2]
- C0302189
Description
Indication
Data type
text
Description
Infusion count
Data type
float
Alias
- UMLS CUI [1,1]
- C0574032
- UMLS CUI [1,2]
- C0750480
Description
Acute Graft versus Host Disease
Data type
text
Alias
- UMLS CUI [1]
- C0856825
Description
Disease treatment
Data type
integer
Alias
- UMLS CUI [1]
- C0087111
Description
LAST DISEASE AND PATIENT STATUS
Description
LAST DISEASE STATUS
Data type
integer
Description
Conception
Data type
text
Alias
- UMLS CUI [1]
- C0032961
Description
Survival Status
Data type
integer
Alias
- UMLS CUI [1]
- C1148433
Description
Type of score used
Data type
integer
Description
Performance score
Data type
integer
Alias
- UMLS CUI [1]
- C1518965
Description
Cause of Death
Data type
text
Alias
- UMLS CUI [1]
- C0007465
Description
Cause of death
Data type
text
Alias
- UMLS CUI [1]
- C0007465
Description
HSCT related cause
Data type
integer
Description
ADDITIONAL NOTES IF APPLICABLE
Similar models
16pp EBMT Inherited Disorders
- StudyEvent: ODM
C0027361 (UMLS CUI [1,2])
C0337611 (UMLS CUI [1,3])
C0085205 (UMLS CUI [1,4])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
C0027361 (UMLS CUI [1,2])
C0005615 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
C0441799 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
C0009566 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
C1522609 (UMLS CUI [1,2])
C2348235 (UMLS CUI [1,2])
C0302189 (UMLS CUI [1,2])
C0750480 (UMLS CUI [1,2])