Informatie:
Fout:
ID
15417
Beschrijving
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, HHV-6, RSV, Other respiratory virus (influenza, parainfluenza,rhinovirus), Adenovirus, HBV, HCV, HIV, Papovavirus, Parvovirus, Other
Trefwoorden
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- 31-05-16 31-05-16 -
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31 mei 2016
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Creative Commons BY-NC 3.0
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General Info EBMT Lymphoma
16pp General Info EBMT Lymphoma 04 Lym.
- StudyEvent: ODM
Similar models
16pp General Info EBMT Lymphoma 04 Lym.
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
text
C2348585 (UMLS CUI [1])
Hospital
Item
Name of the hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
text
Contact person
Item
Contact person
text
Telephone
Item
Telephone number
integer
C1515258 (UMLS CUI [1])
Fax
Item
Fax
text
C1549619 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
E-Mail
Item
E-Mail
text
C1705961 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
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])
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
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])
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
Rh factor
Item
Rh factor Donor a
boolean
C0035403 (UMLS CUI [1,1])
C0013018 (UMLS CUI [1,2])
C0013018 (UMLS CUI [1,2])
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])
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])
C2348235 (UMLS CUI [1,2])
Item
Has the information requested in this section been submitted with a previous transplant registration for this patient?
integer
Code List
Has the information requested in this section been submitted with a previous transplant registration for this patient?
CL Item
Yes: go to page 4, Treatment given before the 1st transplant (1)
CL Item
No: proceed with this section (2)
CL Item
Non Hodgkin Lymphoma (NHL) (3)
Splenic marginal zone lymphoma
Item
Mature B-cell Neoplasms
boolean
Extranodal marginal zone lymphoma of mucosa associated lymphoid tissue (MALT)
Item
Mature B-cell Neoplasms
boolean
Nodal marginal zone lymphoma
Item
Mature B-cell Neoplasms
boolean
Nodal marginal zone lymphoma
Item
Mature B-cell Neoplasms
boolean
Lymphoplasmacytic lymphoma (LPL)
Item
Mature B-cell Neoplasms
boolean
Waldenstrom macroglobulinaemia (LPL with monoclonal IgM)
Item
Mature B-cell Neoplasms
boolean
CL Item
Grade I (1)
CL Item
Grade II (2)
CL Item
Grade III (3)
CL Item
Not evaluated (4)
Primary cutaneous follicle centre lymphoma
Item
Mature B-cell Neoplasms
boolean
Mantle cell lymphoma
Item
Mature B-cell Neoplasms
boolean
CL Item
T-cell/hystiocyte rich large B cell lymphoma (1)
CL Item
Primary DLBCL of the CNS (2)
CL Item
Primary cutaneous DLBCL, leg type (3)
CL Item
EBV positive DLBCL of the elderly (4)
DLBCL associated with chronic inflammation
Item
Mature B-cell Neoplasms
boolean
Lymphomatoid granulomatosis
Item
Mature B-cell Neoplasms
boolean
Primary mediastinal (thymic) large B-cell lymphoma
Item
Mature B-cell Neoplasms
boolean
Intravascular large B-cell lymphoma
Item
Mature B-cell Neoplasms
boolean
ALK positive large B-cell lymphoma
Item
Mature B-cell Neoplasms
boolean
Plasmablastic lymphoma
Item
Mature B-cell Neoplasms
boolean
Large B-cell lymphoma arising in HHV8- associated multicentric Castleman disease
Item
Mature B-cell Neoplasms
boolean
Primary effusion lymphoma (PEL)
Item
Mature B-cell Neoplasms
boolean
Burkitt lymphoma (BL)
Item
Mature B-cell Neoplasms
boolean
B-cell lymphoma, unclassifiable, with features intermediate between diffuse large B-cell lymphoma and Burkitt lymphoma (Intermediate DLCBL/BL)
Item
Mature B-cell Neoplasms
boolean
B-cell lymphoma, unclassifiable, with features intermediate between diffuse large B-cell lymphoma and classical Hodgkin lymphoma (Intermediate DLCBL/HD
Item
Mature B-cell Neoplasms
boolean
Other B-cell, specify
Item
Mature B-cell Neoplasms
text
Item
Transformed from another type of lymphoma at HSCT?
integer
Code List
Transformed from another type of lymphoma at HSCT?
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
CL Item
T-cell large granular lymphocytic leukaemia (1)
CL Item
Aggressive NK-cell leukaemia (2)
CL Item
Systemic EBV positive T-cell lymphoproliferative disease of childhood (3)
CL Item
Hydroa vacciniforme-like lymphoma (4)
CL Item
Adult T-cell leukaemia/lymphoma (5)
CL Item
Extranodal NK/T-cell lymphoma, nasal type (6)
CL Item
Enteropathy-associated T-cell lymphoma (7)
CL Item
Hepatosplenic T-cell lymphoma (8)
CL Item
Subcutaneous panniculitis-like T-cell lymphoma (9)
CL Item
Mycosis fungoides (MF) (10)
CL Item
Sézary syndrome (11)
CL Item
Lymphomatoid papulosis (12)
CL Item
Primary cutaneous anaplastic large cell lymphoma (13)
CL Item
Primary cutaneous gamma-delta T-cell lymphoma (14)
CL Item
Primary cutaneous CD8 positive aggressive epidermotropic cytotoxic T-cell lymphoma (15)
CL Item
Primary cutaneous CD4 positive small/medium T-cell lymphoma (16)
CL Item
Peripheral T-cell lymphoma, NOS (PTCL) (17)
CL Item
Angioimmunoblastic T-cell lymphoma (18)
CL Item
Anaplastic large-cell lymphoma (ALCL), ALK-positive (19)
CL Item
Anaplastic large-cell lymphoma (ALCL), ALK-negative (20)
CL Item
Other T-cell, specify (21)
CL Item
Nodular lymphocyte predominant (Nodular lymphocyte predominant)
CL Item
Classical predominant (Classical predominant)
CL Item
Nodular sclerosis classical (Nodular sclerosis classical)
CL Item
Lymphocyte-rich classical (Lymphocyte-rich classical)
CL Item
Mixed cellularity classical (Mixed cellularity classical)
CL Item
Lymphocyte-depleted classical (Lymphocyte-depleted classical)
CL Item
Other, specify (Other, specify)
CL Item
I (I)
CL Item
II (II)
CL Item
III (III)
CL Item
IV (IV)
CL Item
Absent (A) (Absent (A))
CL Item
Present (B) (Present (B))
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
< 5 cm (1)
CL Item
5-10 cm (2)
CL Item
> 10 cm (3)
CL Item
No mass (4)
CL Item
Unknown (5)
CL Item
Normal (1)
CL Item
Elevated (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Nodes below the diaphragm (1)
CL Item
Bone marrow (2)
CL Item
Extranodal (CNS) (3)
CL Item
Mediastinum (4)
CL Item
Extranodal (testis /ovary) (5)
CL Item
Nodes above the diaphragm (6)
CL Item
Lung (7)
CL Item
Liver (8)
CL Item
Spleen (9)
CL Item
Other (10)
Item
Has the information requested in this section been submitted with a previous transplant registration for this patient?
text
Code List
Has the information requested in this section been submitted with a previous transplant registration for this patient?
CL Item
Yes: go to page 5, ”Disease History before HSCT" (Yes: go to page 5, ”Disease History before HSCT")
CL Item
No: proceed with this section (No: proceed with this section)
Item
WAS THE PATIENT TREATED BEFORE THE 1ST TRANSPLANT PROCEDURE?
integer
Code List
WAS THE PATIENT TREATED BEFORE THE 1ST TRANSPLANT PROCEDURE?
CL Item
WAS THE PATIENT TREATED BEFORE THE 1ST TRANSPLANT PROCEDURE? (1)
CL Item
Yes Date started (2)
Sequential number of this treatment
Item
Sequential number of this treatment (counted from diagnosis)
text
CL Item
No (No )
CL Item
Yes: Regimen (Yes: Regimen)
CL Item
Unknown (Unknown)
CL Item
No (No )
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Radiotherapy
Item
Radiotherapy
boolean
C1522449 (UMLS CUI [1])
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (> 50 %) ( Partial remission (> 50 %) )
CL Item
No response (< 50 %) ( No response (< 50 %))
Item
ADDITIONAL TREATMENT GIVEN BEFORE THE 1ST TRANSPLANT?
text
Code List
ADDITIONAL TREATMENT GIVEN BEFORE THE 1ST TRANSPLANT?
CL Item
Yes Date started ( Yes Date started)
CL Item
No – Proceed to page 5, ”Disease History before HSCT" (No – Proceed to page 5, ”Disease History before HSCT")
CL Item
Unknown (Unknown)
Sequential number of this treatment
Item
Sequential number of this treatment (counted from diagnosis)
text
Pharmacotherapy
Item
Chemo/drug/agent
boolean
C0013216 (UMLS CUI [1])
Regimen
Item
Treatment Regimen
text
C0949219 (UMLS CUI [1])
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Radiotherapy
Item
Radiotherapy
boolean
C1522449 (UMLS CUI [1])
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (> 50 %) ( Partial remission (> 50 %) )
CL Item
No response (< 50 %) (No response (< 50 %))
Date of transplant
Item
Date of transplant
date
Total number of lines before this transplant
Item
Total number of lines before this transplant (since diagnosis if 1st transplant, or since last reported transplant)
integer
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Splenectomy
Item
Splenectomy
boolean
Splenectomy
Item
Splenectomy
date
CL Item
Yes: Date of first CR (Yes: Date of first CR)
CL Item
No (No)
Number of treatment lines necessary to reach this first remission
Item
Number of treatment lines necessary to reach this first remission
float
Number of CR’s
Item
Number of CR’s
float
Item
1st Relapse before the 1st transplant TO BE COMPLETED ONLY IF PATIENT HAD A CR BEFORE THE 1ST TRANSPLANT
integer
Code List
1st Relapse before the 1st transplant TO BE COMPLETED ONLY IF PATIENT HAD A CR BEFORE THE 1ST TRANSPLANT
CL Item
Yes: Date of first relapse (1)
CL Item
No (2)
CL Item
Complete remission (CR) (Complete remission (CR))
CL Item
Unconfirmed (Unconfirmed)
CL Item
Confirmed -By CT scan (Confirmed -By CT scan)
CL Item
Confirmed -By PET (Confirmed -By PET)
CL Item
Relapse (Relapse)
CL Item
1st (1)
CL Item
2nd (2)
CL Item
3rd or higher (3)
CL Item
1st (1)
CL Item
2nd (2)
CL Item
3rd or higher (3)
CL Item
Untreated (untested) (Untreated (untested))
CL Item
Sensitive (responding) (Sensitive (responding))
CL Item
Resistant (Resistant)
Item
If patient has never achieved a Complete remission
text
Code List
If patient has never achieved a Complete remission
CL Item
At diagnosis (untreated) (At diagnosis (untreated))
CL Item
Primary refractory disease ( Primary refractory disease)
CL Item
Very good 1st PR (> 90 %) (Very good 1st PR (> 90 %))
CL Item
PR ( PR)
CL Item
Progression (Progression)
CL Item
1st (1st)
CL Item
2nd (2nd)
CL Item
3rd or higher (3rd or higher)
CL Item
Yes (Yes )
CL Item
No ( No )
CL Item
Not evaluated ( Not evaluated )
CL Item
Unknown (Unknown)
CL Item
< 5 cm (< 5 cm )
CL Item
5-10 cm ( 5-10 cm )
CL Item
> 10 cm ( > 10 cm )
CL Item
No mass ( No mass )
CL Item
Not evaluated ( Not evaluated)
Item
Specific sites of disease (to be completed ONLY if patient NOT in CR at transplant)
integer
Code List
Specific sites of disease (to be completed ONLY if patient NOT in CR at transplant)
CL Item
Nodes below the diaphragm Bone marrow (1)
CL Item
Extranodal (CNS) (2)
CL Item
Mediastinum (3)
CL Item
Extranodal (testis /ovary) (4)
CL Item
Nodes above the diaphragm (5)
CL Item
Lung (6)
CL Item
Liver (7)
CL Item
Spleen (8)
CL Item
Other (9)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes: Planned (planned before HSCT took place) (Yes: Planned (planned before HSCT took place))
CL Item
Not planned (for relapse/progression or persistent disease) ( Not planned (for relapse/progression or persistent disease))
Date started
Item
ADDITIONAL DISEASE TREATMENT
date
CL Item
Text (Text)
CL Item
Unknown (Unknown)
CL Item
yes no=no not known=not known (yes)
Item
BEST RESPONSE AT 100 DAYS AFTER TRANSPLANTATION
text
Code List
BEST RESPONSE AT 100 DAYS AFTER TRANSPLANTATION
CL Item
Complete remission (maintained or achieved) (Complete remission (maintained or achieved) )
CL Item
Partial remission (> 50 %) ( Partial remission (> 50 %) )
CL Item
No response (< 50 %) ( No response (< 50 %))
CL Item
Unconfirmed CRCONFI1 ( Unconfirmed CRCONFI1 )
CL Item
Progression ( Progression )
CL Item
Early death/Not evaluable ( Early death/Not evaluable)
CL Item
Confirmed: ( Confirmed: )
CL Item
By CT scan ( By CT scan)
CL Item
By PET ( By PET)
If Complete remission: Date of CR
Item
If Complete remission: Date of CR
date
CL Item
AUTOgraft, proceed to Autograft form (1)
CL Item
ALLOgraft or Syngeneic graft, proceed to Allograft form (2)
TYPE OF TRANSPLANT
Item
If Other, contact the EBMT Central Registry Office for instructions
text
Unique Identification Code (UIC)
Item
Unique Identification Code (UIC) (if known)
text
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])
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])
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])
C0011008 (UMLS CUI [1,2])
DATE OF LAST CONTACT OR DEATH
Item
DATE OF LAST CONTACT OR DEATH
date
Item Group
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Item
Maximum Grade of Acute GVHD
text
C0856825 (UMLS CUI [1,1])
C0806909 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,3])
C1561607 (UMLS CUI [1,4])
C0856825 (UMLS CUI [1,5])
C0441800 (UMLS CUI [1,6])
C0806909 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,3])
C1561607 (UMLS CUI [1,4])
C0856825 (UMLS CUI [1,5])
C0441800 (UMLS CUI [1,6])
CL Item
Agvhd Grade 0 (0)
CL Item
Agvhd Grade I (I)
CL Item
Agvhd Grade Ii (II)
CL Item
Agvhd Grade Iii (III)
CL Item
Agvhd Grade Iv (IV)
CL Item
Agvhd Present, Grade Unknown (Present, grade unknown)
CL Item
New onset (1)
CL Item
Recurrent (2)
CL Item
Persistent (3)
CL Item
Tapering (Tapering )
CL Item
DLI (DLI)
CL Item
Unexplained ( Unexplained)
Date onset of this episode
Item
Date onset of this episode (if new or recurrent)
date
C0574845 (UMLS CUI [1])
CL Item
Not applicable (1)
Item
Stage skin
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
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])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
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])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
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)
CL Item
No (1)
CL Item
Yes (2)
aGvHD Date of resolution
Item
Date of resolution
date
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Present continously since last reported episode (Present continously since last reported episode)
CL Item
Resolved (Resolved)
CL Item
No (1)
CL Item
Yes, First Episode (2)
CL Item
Yes, Recurrence (3)
Date of onset
Item
Date of onset Date of onset
date
C0574845 (UMLS CUI [1])
CL Item
Limited (1)
CL Item
Extensive (2)
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)
Date of Resolution
Item
If resolved, specify the date of resolution:
date
C1514893 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Infection related complications
Item
Infection related complications
boolean
C0009450 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0009566 (UMLS CUI [1,2])
Bacteremia / fungemia / viremia / parasites
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary
text
Bacteremia / fungemia / viremia / parasites
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Septic shock
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary
text
Septic shock
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
ARDS
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
ARDS
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Multiorgan failure due to infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Multiorgan failure due to infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Pneumonia
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Pneumonia
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Hepatitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Hepatitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
CNS infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
CNS infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Gut infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Gut infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Skin infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Skin infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Cystitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Cystitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Other
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Other
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Non infection related complications
Item
Non infection related complications
boolean
C0009566 (UMLS CUI [1])
Item
Specify: Idiopathic pneumonia syndrome
text
C1504431 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Specify: Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
CL Item
Yes (Yes )
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Specify: HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Specify: Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
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])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Quality-of-LifeAssessmentOtherAssistanceInd-2
Item
Other
boolean
C1512698 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0281588 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C0281588 (UMLS CUI [1,3])
Date Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
Date VOD
Item
Date VOD
date
Date Cataract
Item
Date Cataract
date
Date Haemorrhagic cystitis, non infectious
Item
Date Haemorrhagic cystitis, non infectious
date
Date ARDS, non infectious
Item
Date ARDS, non infectious
date
Date Multiorgan failure, non infectious
Item
Date Multiorgan failure, non infectious
date
Date HSCT-associated microangiopathy
Item
Date HSCT-associated microangiopathy
date
Date Renal failure requiring dialysis
Item
Date Renal failure requiring dialysis
date
Date Haemolytic anaemia due to blood group
Item
DAte Haemolytic anaemia due to blood group
date
DAte Aseptic bone necrosis
Item
Date Aseptic bone necrosis
date
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Not evaluated (Not evaluated)
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)
Item Group
DATE(S) AND RESULTS OF ALL TESTS DONE FOR ALL DONORS
Date of Test
Item
Date of Test
date
C0024671 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Identification
Item
Identification of donor or Cord Blood Unit given by the centre
text
C1718162 (UMLS CUI [1])
Item
Number in the infusion order (if applicable)
integer
C2348184 (UMLS CUI [1])
CL Item
......... (1)
CL Item
N/A (2)
Bone marrow
Item
Cell type on which test was performed (% Donor Cells): BM
float
C0005953 (UMLS CUI [1])
PB mononuclear cells (PBMC)
Item
Cell type on which test was performed (% Donor cells): PB mononuclear cells (PBMC)
float
C1321301 (UMLS CUI [1])
T-Cells
Item
Cell type on which test was performed (% Donor cells): T-Cells
float
C0039194 (UMLS CUI [1])
B-Cells
Item
Cell type on which test was performed (% Donor cells): B-Cells
float
C0004561 (UMLS CUI [1])
Red blood cells
Item
Cell type on which test was performed (% Donor cells): Red blood cells
float
C0014772 (UMLS CUI [1])
Monocytes
Item
Cell type on which test was performed (% Donor cells): Monocytes
float
C0026473 (UMLS CUI [1])
PMNs (neutrophils)
Item
Cell type on which test was performed (% Donor cells): PMNs (neutrophils)
float
C0200633 (UMLS CUI [1])
Lymphocytes, NOS
Item
Cell type on which test was performed (% Donor cells): Lymphocytes, NOS
float
C0024264 (UMLS CUI [1])
Myeloid cells, NOS
Item
Cell type on which test was performed (% Donor cells): Myeloid cells, NOS
float
C0887899 (UMLS CUI [1])
Other cell type - value
Item
Cell type on which test was performed (% Donor cells): Other (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.)
float
C0449475 (UMLS CUI [1,1])
C1522609 (UMLS CUI [1,2])
C1522609 (UMLS CUI [1,2])
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])
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, date of diagnosis (Yes, date of diagnosis)
CL Item
No at date of this follow-up (No at date of this follow-up)
CL Item
AML (AML)
CL Item
MDS (MDS)
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
CL Item
Other (Other)
Diagnosis
Item
If other diagnosis, please specify
text
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
ADDITIONAL TREATMENT
Item
if yes, date started
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
integer
CL Item
CR (1)
CL Item
Not in CR (2)
CL Item
Not evaluated (3)
CL Item
Donor lymphocyte infusion (DLI) (1)
CL Item
Mesenchymal cells (2)
CL Item
Other (3)
CL Item
Unknown (4)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
CL Item
Evaluated (Evaluated )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
Chronological number
Item
Chronological number of this cell therapy for this patient
float
C2348184 (UMLS CUI [1])
Item
Indication (check all that apply)
text
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
C0302189 (UMLS CUI [1,2])
CL Item
Planned/ protocol (Planned/ protocol)
CL Item
Treatment for disease (Treatment for disease)
CL Item
Prophylactic (Prophylactic)
CL Item
Mixed chimaerism (Mixed chimaerism)
CL Item
Treatment of GvHD (Treatment of GvHD)
CL Item
Treatment viral infection (Treatment viral infection)
CL Item
Loss/decreased chimaerism (Loss/decreased chimaerism)
CL Item
Treatment PTLD, EBV, lymphoma (Treatment PTLD, EBV, lymphoma)
CL Item
Other (Other)
Number of Infusions
Item
Number of Infusions (within 10 weeks) (count only infusions that are part of same regimen and given for the same indication)
float
C2348184 (UMLS CUI [1,1])
C1289919 (UMLS CUI [1,2])
C1289919 (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)
CL Item
Unknown (4)
Pharmacotherapy
Item
Chemo/drug/agent
boolean
C0013216 (UMLS CUI [1])
CL Item
yes no=no not known=not known (yes)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item Group
FIRST EVIDENCE OF RELAPSE OR PROGRESSION SINCE LAST HSCT
Item
Relapse or Progression
text
C0277556 (UMLS CUI [1,1])
C0242656 (UMLS CUI [1,2])
C0242656 (UMLS CUI [1,2])
CL Item
Previously reported (Previously reported)
CL Item
No (No)
CL Item
Yes, date (Yes)
CL Item
Continous progression since transplant (Continous progression since transplant)
CL Item
Unknown (Unknown)
Item
last disease status
text
C0332307 (UMLS CUI [1,1])
C0012634 (UMLS CUI [1,2])
C0678257 (UMLS CUI [1,3])
C0012634 (UMLS CUI [1,2])
C0678257 (UMLS CUI [1,3])
CL Item
Complete Remission (Complete Remission)
CL Item
Relapse (Relapse)
Item
Has patient or partner become pregnant after this HSCT?
text
C0032961 (UMLS CUI [1])
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
alive (0)
CL Item
dead (1)
CL Item
Karnofsky (Karnofsky)
CL Item
Lansky (Lansky)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
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)
CL Item
Relapse or progression (Relapse or progression)
CL Item
Secondary malignancy (including lymphoproliferative disease) (Secondary malignancy (including lymphoproliferative disease))
CL Item
HSCT related cause (HSCT related cause )
CL Item
Unknown (Unknown )
CL Item
Other (Other)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
text
C0007465 (UMLS CUI [1,1])
C0018133 (UMLS CUI [1,2])
C0018133 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
text
C0007465 (UMLS CUI [1,1])
C0206061 (UMLS CUI [1,2])
C0206061 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
text
C0007465 (UMLS CUI [1,1])
C0919924 (UMLS CUI [1,2])
C0919924 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
text
C0007465 (UMLS CUI [1,1])
C0009450 (UMLS CUI [1,2])
C0009450 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
bacterial (1)
CL Item
viral (2)
CL Item
fungal (3)
CL Item
parasitic (4)
CL Item
unknown (5)
Item
Rejection / poor graft function (check as many as appropriate)
integer
Code List
Rejection / poor graft function (check as many as appropriate)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
text
C0007465 (UMLS CUI [1,1])
C0948441 (UMLS CUI [1,2])
C0948441 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
text
C0007465 (UMLS CUI [1,1])
C0019080 (UMLS CUI [1,2])
C0019080 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
text
C0007465 (UMLS CUI [1,1])
C0876994 (UMLS CUI [1,2])
C0876994 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
text
C0007465 (UMLS CUI [1,1])
C3160947 (UMLS CUI [1,2])
C3160947 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
text
C0007465 (UMLS CUI [1,1])
C1142499 (UMLS CUI [1,2])
C1142499 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
text
C0007465 (UMLS CUI [1,1])
C1167791 (UMLS CUI [1,2])
C1167791 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
text
C0007465 (UMLS CUI [1,1])
C0035078 (UMLS CUI [1,2])
C0035078 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
text
C0007465 (UMLS CUI [1,1])
C0026766 (UMLS CUI [1,2])
C0026766 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Other
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Other
boolean
Comments
Item
Comments
text
IDENTIFICATION & SIGNATURE
Item
Identification
text
C0205396 (UMLS CUI [1])