EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
text
C2348585 (UMLS CUI [1])
Hospital
Item
Hospital
text
C0019994 (UMLS CUI [1])
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
Not evaluated (3)
Name of study trial
Item
Name of study trial
text
C2348560 (UMLS CUI [1])
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])
PersonBirthDate
Item
Date of Birth
date
C0011008 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0005615 (UMLS CUI [1,3])
ABO Group
Item
ABO Group
text
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
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
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
Has the information requested in this section been submitted with a previous HSCT registration for this patient?
integer
Code List
Has the information requested in this section been submitted with a previous HSCT registration for this patient?
CL Item
Yes: go to page 2, Pre HSCT Treatment (1)
CL Item
No: proceed with this section (2)
Code List
SUBCLASSIFICATION
CL Item
Multiple myeloma (Multiple myeloma)
CL Item
Plasma Cell Leukaemia (Plasma Cell Leukaemia)
CL Item
Solitary plasmacytoma of bone (Solitary plasmacytoma of bone)
CL Item
Monoclonal light and heavy chain deposition disease (LCDD/HCDD) (Monoclonal light and heavy chain deposition disease (LCDD/HCDD))
Item
if Multiple myeloma
integer
Code List
if Multiple myeloma
CL Item
Heavy chain and light chain (check light and heavy chain types) (1)
CL Item
Light chain only (check light chain type only) (2)
CL Item
Non secretory (3)
Item
Heavy chain and light chain
integer
Code List
Heavy chain and light chain
Item
Heavy chain and light chain
integer
Code List
Heavy chain and light chain
Item
Light chain only
integer
Code List
Light chain only
Item
SALMON AND DURIE Stage at diagnosis
integer
C3846373 (UMLS CUI [1])
Code List
SALMON AND DURIE Stage at diagnosis
Item
ISS (Multiple Myeloma Prognosis) (Stage 1-3)
integer
C2346508 (UMLS CUI [1])
Code List
ISS (Multiple Myeloma Prognosis) (Stage 1-3)
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
CL Item
Not Done or failed (Not Done or failed)
CL Item
Done: normal (Done: normal)
CL Item
Done: abnormal (Done: abnormal)
CL Item
Unknown (Unknown)
Number of abnormal metaphases
Item
Number of metaphases with anomalies:
float
C1621812 (UMLS CUI [1,1])
C0237753 (UMLS CUI [1,2])
Number of examined metaphases
Item
Number of metaphases examined
float
C1621812 (UMLS CUI [1,1])
C0237753 (UMLS CUI [1,2])
C0260877 (UMLS CUI [1,3])
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND Del 13q14
text
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND Del 13q14
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND t(11;14)
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND t(11;14)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND abn 17q
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND abn 17q
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND 17p del
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND 17p del
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND t(4:14)
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND t(4:14)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND 1q amplification
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND 1q amplification
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND c-myc
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND c-myc
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Item
IF Other ABNORMAL, INDICATE ABNORMALITIES FOUND, please specify
integer
Code List
IF Other ABNORMAL, INDICATE ABNORMALITIES FOUND, please specify
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
Chromosome analysis
Item
Other or associated abnormalities (specify) please specify
text
Item
Molecular Analysis
integer
C1513380 (UMLS CUI [1])
Code List
Molecular Analysis
CL Item
Done but failed (1)
CL Item
Done, successful (2)
CL Item
Not evaluated (3)
CLINICAL AND LABORATORY DATA
Item
Hb (g/dL)
float
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum creatinine (mol/L)
float
Item
Serum creatinine (mol/L)
text
Code List
Serum creatinine (mol/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum calcium (mmol/L)
float
Item
Serum calcium (mmol/L)
integer
Code List
Serum calcium (mmol/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum albumin (g/L)
float
Item
Serum albumin (g/L)
integer
Code List
Serum albumin (g/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
BM aspirate: % plasmacytosis
float
Item
BM aspirate: % plasmacytosis
integer
Code List
BM aspirate: % plasmacytosis
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
BM trephine: % plasmacytosis
float
Item
BM trephine: % plasmacytosis
integer
Code List
BM trephine: % plasmacytosis
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in serum (g/L)
float
Item
Monoclonal Ig in serum (g/L)
integer
Code List
Monoclonal Ig in serum (g/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in urine (g/24 h)
float
Item
Monoclonal Ig in urine (g/24 h)
integer
Code List
Monoclonal Ig in urine (g/24 h)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum ß2 microglobulin (mg/L)
float
Item
Serum ß2 microglobulin (mg/L)
integer
Code List
Serum ß2 microglobulin (mg/L)
CL Item
Not evaluated (1)
Item
INVOLVEMENT AT DIAGNOSIS, Bone structure
integer
Code List
INVOLVEMENT AT DIAGNOSIS, Bone structure
CL Item
Not evaluated (4)
Item
INVOLVEMENT AT DIAGNOSIS, Bone structure
integer
Code List
INVOLVEMENT AT DIAGNOSIS, Bone structure
Extramedullary involvement
Item
if yes, specify location
text
Item
Was the patient treated before the HSCT procedure?
text
C0087111 (UMLS CUI [1])
Code List
Was the patient treated before the HSCT procedure?
CL Item
No (proceed to `Date of HSCT`) (No (proceed to `Date of HSCT`))
CL Item
Unknown (Unknown)
Sequential number of this treatment
Item
(counted from diagnosis, or last HSCT if applicable)
text
Item
Chemo/Drugs
text
C0695347 (UMLS CUI [1])
CL Item
Yes, Chemo/Drug regimen (Yes, Chemo/Drug regimen)
Item
Radiotherapy
integer
C0695347 (UMLS CUI [1])
Item
see manual for full definition of each response
integer
Code List
see manual for full definition of each response
CL Item
Stable disease (5)
CL Item
Not evaluated (7)
Item
Additional Pre-HSCT treatment
text
C1706712 (UMLS CUI [1,1])
C2709094 (UMLS CUI [1,2])
Code List
Additional Pre-HSCT treatment
CL Item
Unknown (Unknown)
Sequential number of this treatment
Item
(counted from diagnosis, or last HSCT if applicable)
text
CL Item
Yes, Chemo/Drug regimen (2)
Item
Radiotherapy
integer
Item
(see manual for full definition of each response)
integer
Code List
(see manual for full definition of each response)
CL Item
Stable disease (5)
CL Item
Not evaluated (7)
Item
ADDITIONAL PRE-HSCT TREATMENT?
integer
Code List
ADDITIONAL PRE-HSCT TREATMENT?
CL Item
Yes, Date started (2)
Sequential number of this treatment
Item
Sequential number of this treatment
text
CL Item
Yes: Chemo/Drug regimen (Yes: Chemo/Drug regimen)
Item
Radiotherapy
integer
CL Item
Stable disease (5)
CL Item
Not evaluated (7)
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
HSCT type
integer
C0472699 (UMLS CUI [1])
Date of 1st collection or pheresis
Item
Autologous
date
Item
STATUS OF DISEASE AT COLLECTION
integer
Code List
STATUS OF DISEASE AT COLLECTION
CL Item
At diagnosis (untreated) (1)
CL Item
Stringent complete remission (sCR) (2)
CL Item
Complete remission (CR) (3)
CL Item
Very good PR (VGPR) (4)
CL Item
Relapse from CR (6)
CL Item
Stable disease (7)
Item
If sCR or CR: NUMBER OF THIS COMPLETE REMISSION
integer
Code List
If sCR or CR: NUMBER OF THIS COMPLETE REMISSION
CL Item
3rd or higher (3)
Item
If VGPR or PR: NUMBER OF THIS PARTIAL REMISSION
integer
Code List
If VGPR or PR: NUMBER OF THIS PARTIAL REMISSION
CL Item
3rd or higher (3)
Item
Relapse from CR, NUMBER OF THIS RELAPSE
integer
Code List
Relapse from CR, NUMBER OF THIS RELAPSE
CL Item
3rd or higher (3)
Item
Relapse from CR, NUMBER OF THIS RELAPSE
integer
Code List
Relapse from CR, NUMBER OF THIS RELAPSE
CL Item
3rd or higher (3)
CLINICAL AND LABORATORY DATA
Item
Hb (g/dL)
float
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum creatinine (mol/L)
float
Item
Serum creatinine (mol/L)
integer
Code List
Serum creatinine (mol/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum calcium (mmol/L)
float
Item
Serum calcium (mmol/L)
integer
Code List
Serum calcium (mmol/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Serum albumin (g/L)
float
Item
Serum albumin (g/L)
integer
C0201838 (UMLS CUI [1])
Code List
Serum albumin (g/L)
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
BM aspirate: % plasmacytosis
float
Item
BM aspirate: % plasmacytosis
integer
Code List
BM aspirate: % plasmacytosis
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
BM trephine: % plasmacytosis
float
Item
BM trephine: % plasmacytosis
integer
Code List
BM trephine: % plasmacytosis
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in serum (g/L)
float
Item
Monoclonal Ig in serum (g/L)
integer
Code List
Monoclonal Ig in serum (g/L)
CL Item
Not evaluated (1)
Item
Immunofixation of serum
integer
Code List
Immunofixation of serum
CL Item
Not evaluated (3)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in urine (g/24 h)
float
Item
Monoclonal Ig in urine (g/24 h)
integer
Code List
Monoclonal Ig in urine (g/24 h)
CL Item
Not evaluated (1)
Item
Immunofixation of urine
integer
Code List
Immunofixation of urine
CL Item
Not evaluated (3)
CLINICAL AND LABORATORY DATA
Item
Serum 2 microglobulin (mg/L)
float
Item
Serum 2 microglobulin (mg/L)
integer
Code List
Serum 2 microglobulin (mg/L)
CL Item
Not evaluated (1)
Item
Bone structure, Lytic lesions
text
Code List
Bone structure, Lytic lesions
CL Item
Not evaluated (Not evaluated)
Item
DISEASE STATUS AT HSCT
integer
Code List
DISEASE STATUS AT HSCT
CL Item
Stringent complete remission (sCR) (2)
CL Item
Complete remission (CR) (3)
CL Item
Very good PR (VGPR) (4)
CL Item
Relapse from CR (6)
CL Item
Stable disease (no change, includes old MR) (7)
Item
NUMBER OF THIS COMPLETE REMISSION
integer
Code List
NUMBER OF THIS COMPLETE REMISSION
CL Item
3rd or higher (3)
Item
NUMBER OF THIS PARTIAL REMISSION
integer
Code List
NUMBER OF THIS PARTIAL REMISSION
CL Item
3rd or higher (3)
Item
NUMBER OF THIS RELAPSE
integer
Code List
NUMBER OF THIS RELAPSE
CL Item
3rd or higher (3)
Item
(not applicable for non secretory myelona)
integer
Code List
(not applicable for non secretory myelona)
CLINICAL AND LABORATORY DATA
Item
Hb (g/dL)
float
CL Item
Not evaluated (Not evaluated)
CLINICAL AND LABORATORY DATA
Item
Serum creatinine (mol/L)
float
Item
Serum creatinine (mol/L)
integer
Code List
Serum creatinine (mol/L)
CL Item
Not evaluated (Not evaluated)
CLINICAL AND LABORATORY DATA
Item
Serum calcium (mmol/L)
float
Item
Serum calcium (mmol/L)
integer
Code List
Serum calcium (mmol/L)
CL Item
Not evaluated (Not evaluated)
CLINICAL AND LABORATORY DATA
Item
Serum albumin (g/L)
float
Item
Serum albumin (g/L)
integer
Code List
Serum albumin (g/L)
CL Item
Not evaluated (Not evaluated)
CLINICAL AND LABORATORY DATA
Item
BM aspirate: % plasmacytosis
float
Item
BM aspirate: % plasmacytosis
integer
Code List
BM aspirate: % plasmacytosis
CL Item
Not evaluated (Not evaluated)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in serum (g/L)
float
Item
Monoclonal Ig in serum (g/L)
integer
Code List
Monoclonal Ig in serum (g/L)
CL Item
Not evaluated (Not evaluated)
Item
Immunofixation of serum
integer
Code List
Immunofixation of serum
CL Item
Not evaluated (3)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in urine (g/24 h)
float
Item
Monoclonal Ig in urine (g/24 h)
integer
Code List
Monoclonal Ig in urine (g/24 h)
CL Item
Not evaluated (3)
Item
Immunofixation of urine
text
Code List
Immunofixation of urine
CL Item
Negative (Negative)
CL Item
Positive (Positive)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CLINICAL AND LABORATORY DATA
Item
Serum 2 microglobulin (mg/L)
float
Item
Serum 2 microglobulin (mg/L)
integer
Code List
Serum 2 microglobulin (mg/L)
CL Item
Not evaluated (1)
Item
Lytic lesions
integer
CL Item
Not evaluated (4)
Item
Additional Disease Treatment
text
C1706712 (UMLS CUI [1])
Code List
Additional Disease Treatment
CL Item
Unknown (Unknown)
CL Item
Planned (planned before HSCT took place) (Planned (planned before HSCT took place))
CL Item
Not planned (for relapse/progression or persistent disease) (Not planned (for relapse/progression or persistent disease))
ADDITIONAL DISEASE TREATMENT
Item
Date started
date
Item
Chemo/drug/agen
text
C1706712 (UMLS CUI [1])
Code List
Chemo/drug/agen
CL Item
Thalidomide (Thalidomide)
CL Item
Unknown (Unknown)
ADDITIONAL DISEASE TREATMENT
Item
if other
text
CL Item
Unknown (Unknown)
Item
Other treatment
integer
C1706712 (UMLS CUI [1])
Code List
Other treatment
ADDITIONAL DISEASE TREATMENT
Item
if other treatment please specify
text
Code List
BEST RESPONSE TO HSCT AT 100 DAYS
CL Item
Stringent complete remission (sCR) (Stringent complete remission (sCR))
CL Item
Complete remission (CR) (Complete remission (CR))
CL Item
Very good PR (VGPR) (Very good PR (VGPR))
CL Item
Stable disease (no change, includes old MR) (Stable disease (no change, includes old MR))
CL Item
Progression (Progression)
CL Item
Unknown (Unknown)
Item
If sCR or CR: NUMBER OF THIS COMPLETE REMISSION
integer
Code List
If sCR or CR: NUMBER OF THIS COMPLETE REMISSION
CL Item
3rd or higher (3)
Item
If VGPR or PR: NUMBER OF THIS PARTIAL REMISSION
integer
Code List
If VGPR or PR: NUMBER OF THIS PARTIAL REMISSION
CL Item
3rd or higher (3)
BEST RESPONSE TO HSCT AT 100 DAYS
Item
If complete response: Date of CR
date
BEST RESPONSE TO HSCT AT 100 DAYS
Item
Otherwise: date of evaluation
date
Item
(COMPLETE ONLY IF STATUS IS STABLE DISEASE OR PR)
text
Code List
(COMPLETE ONLY IF STATUS IS STABLE DISEASE OR PR)
CL Item
Unknown (Unknown)
CLINICAL AND LABORATORY DATA
Item
BM aspirate: % plasmacytosis
float
Item
BM aspirate: % plasmacytosis
integer
Code List
BM aspirate: % plasmacytosis
CL Item
Not evaluated (1)
CLINICAL AND LABORATORY DATA
Item
BM trephine: % plasmacytosis
float
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in serum (g/L)
float
Item
Monoclonal Ig in serum (g/L)
integer
Code List
Monoclonal Ig in serum (g/L)
CL Item
Not evaluated (1)
Item
Immunofixation of serum
text
Code List
Immunofixation of serum
CL Item
Negative (Negative)
CL Item
Positive (Positive)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CLINICAL AND LABORATORY DATA
Item
Monoclonal Ig in urine (g/24 h)
float
Item
Monoclonal Ig in urine (g/24 h)
integer
Code List
Monoclonal Ig in urine (g/24 h)
CL Item
Not evaluated (1)
Item
Immunofixation of urine
integer
Code List
Immunofixation of urine
CL Item
Not evaluated (3)
CLINICAL AND LABORATORY DATA
Item
Serum 2 microglobulin (mg/L)
float
Item
Serum 2 microglobulin (mg/L)
integer
Code List
Serum 2 microglobulin (mg/L)
CL Item
Not evaluated (1)
Item
Lytic lesions
integer
CL Item
Not evaluated (4)
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 contact the EBMT Central Registry Office for instructions
text
Unique Identification Code (UIC)
Item
Unique Identification Code (UIC) (if known)
text
C2348585 (UMLS CUI [1])
Hospital Unique Patient Number
Item
Hospital Unique Patient Number
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
Not evaluated (3)
Name of study / trial
Item
Name of study / trial
text
C0008976 (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])
Date last contact
Item
Date of Last Contact or Death
date
C0805839 (UMLS CUI [1])
Item
Complete haematological remission obtained after the HSCT in the absence of additional disease treatment
integer
Code List
Complete haematological remission obtained after the HSCT in the absence of additional disease treatment
CL Item
Previously reported (1)
Complete haematological remission obtained after the HSCT in the absence of additional disease treatment
Item
if yes, date
date
Item
Acute Graft versus Host Disease (aGvHD) - Grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
Code List
Acute Graft versus Host Disease (aGvHD) - Grade
CL Item
grade 0 (Absent) (1)
CL Item
Not evaluated (6)
Item
if present
integer
C0856825 (UMLS CUI [1,1])
C0806909 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,3])
C1561607 (UMLS CUI [1,4])
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])
CL Item
Not evaluated (6)
Item
Stage liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
CL Item
Not evaluated (6)
Item
Stage gut
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
CL Item
Not evaluated (6)
Resolution
Item
aGvHD Resolution
boolean
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
aGvHD Date of resolution
Item
Date of resolution
date
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
Item
Presence of cGvHD
text
C0867389 (UMLS CUI [1])
Code List
Presence of cGvHD
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
Item
Presence of cGVHD, if yes
integer
Code List
Presence of cGVHD, if yes
CL Item
First episode (1)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
If present continously since last report, specify cGvHD gade:
text
C0867389 (UMLS CUI [1,1])
C0441799 (UMLS CUI [1,2])
Code List
If present continously since last report, specify cGvHD gade:
CL Item
Limited (Limited)
CL Item
Extensive (Extensive)
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Code List
Organs affected
CL Item
Other, specify (7)
Organs affected
Item
if Other please specify
text
Presence of cGVHD
Item
If Resolved: Date of resolution
date
Infection related complications
Item
Infection related complications
boolean
C0009450 (UMLS CUI [1,1])
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
Septic shock
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
ARDS
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Multiorgan failure due to infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Pneumonia
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Hepatitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
CNS infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Gut infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Skin infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Cystitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Retinitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Other
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
Date Provide different dates for different episodes of the same complication if applicable.
date
Multiorgan failure due to infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Pneumonia
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Hepatitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
CNS infection
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Gut infection
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Skin infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Cystitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Retinitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
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
(Check all that are applicable for this period)
integer
Code List
(Check all that are applicable for this period)
CL Item
Unknown (Unknown)
Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
Item
(Check all that are applicable for this period)
integer
C0948441 (UMLS CUI [1])
Code List
(Check all that are applicable for this period)
CL Item
Unknown (Unknown)
Item
(Check all that are applicable for this period)
integer
C0086543 (UMLS CUI [1])
Code List
(Check all that are applicable for this period)
CL Item
Unknown (Unknown)
Cataract
Item
Cataract
date
Item
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Code List
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
CL Item
Unknown (Unknown)
Haemorrhagic cystitis, non infectious
Item
Haemorrhagic cystitis, non infectious
date
Item
ARDS, non infectious ARDS, non infectious
integer
C0035222 (UMLS CUI [1])
Code List
ARDS, non infectious ARDS, non infectious
CL Item
Unknown (Unknown)
ARDS, non infectious
Item
ARDS, non infectious
date
Item
Check all that are applicable for this period)
integer
Code List
Check all that are applicable for this period)
Multiorgan failure, non infectious
Item
Multiorgan failure, non infectious
date
Item
(Check all that are applicable for this period HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
Code List
(Check all that are applicable for this period HSCT-associated microangiopathy
CL Item
Unknown (Unknown)
HSCT-associated microangiopathy
Item
HSCT-associated microangiopathy
date
Item
(Check all that are applicable for this period) Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
Code List
(Check all that are applicable for this period) Renal failure requiring dialysis
CL Item
Unknown (Unknown)
Renal failure requiring dialysis
Item
Renal failure requiring dialysis
date
Item
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
integer
C0002878 (UMLS CUI [1])
Code List
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
CL Item
Unknown (Unknown)
Haemolytic anaemia due to blood group
Item
Haemolytic anaemia due to blood group
date
Item
Check all that are applicable for this period) Aseptic bone necrosis
text
C0158452 (UMLS CUI [1])
Code List
Check all that are applicable for this period) Aseptic bone necrosis
CL Item
Unknown (Unknown)
Aseptic bone necrosis
Item
Aseptic bone necrosis
date
Other type of complication
Item
Other type of complication > CTCAE grade 2
boolean
CL Item
Not evaluated (3)
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
date
C0024671 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
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])
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
Item
Cell type on which test was performed % Donor cells
float
Item
Test used:
text
C0022885 (UMLS CUI [1])
CL Item
Molecular (Molecular)
CL Item
Cytogenetic (Cytogenetic)
CL Item
ABO group (ABO group)
CL Item
unknown (unknown)
Item
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
integer
Code List
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
CL Item
Previously reported (1)
CL Item
No at date of this follow-up (3)
Date of Diagnosis
Item
Date of Diagnosis
date
C2316983 (UMLS CUI [1])
Item
text
C0011900 (UMLS CUI [1])
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
diagnosis
Item
if other, please specify
text
Item
Treatment given since last report
text
C1706712 (UMLS CUI [1])
Code List
Treatment given since last report
CL Item
Unknown (Unknown)
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
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.
Code List
Disease status before this cellular therapy
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)
Item
Number of Nucleated cells infused (DLI only)
integer
C1180059 (UMLS CUI [1])
Code List
Number of Nucleated cells infused (DLI only)
CL Item
Not evaluated (2)
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
Total number of cells infused (non DLI only)
integer
C0007584 (UMLS CUI [1])
Code List
Total number of cells infused (non DLI only)
CL Item
Not evaluated (2)
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])
Code List
Indication (check all that apply)
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)
Indication
Item
If Other, please specify
text
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
Yes: Planned (planned before HSCT took place) (2)
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (3)
Item
Relapse or Progression
text
C0277556 (UMLS CUI [1,1])
C0242656 (UMLS CUI [1,2])
Code List
Relapse or Progression
CL Item
Previously reported (Previously reported)
CL Item
Continous progression since transplant (Continous progression since transplant)
CL Item
Unknown (Unknown)
RELAPSE OR PROGRESSION
Item
if yes, date diagnosed
date
Item
Last Disease Status
text
C1704632 (UMLS CUI [1])
Code List
Last Disease Status
CL Item
Complete Remission (Complete Remission)
CL Item
Stable disease (Stable disease)
CL Item
Relapse (Relapse)
CL Item
Progression (Progression)
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
Unknown (Unknown)
Item
Survival Status
integer
C1148433 (UMLS CUI [1])
Code List
Survival Status
Item
Type of score used
text
Code List
Type of score used
CL Item
Karnofsky (Karnofsky)
Item
Score
integer
C1518965 (UMLS CUI [1])
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)
Item
If dead, specify cause of death:
text
C0007465 (UMLS CUI [1])
Code List
If dead, specify cause of death:
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 )
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])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
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])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
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])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
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])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
CL Item
Unknown (Unknown)
Item
check as many as appropriate
text
Code List
check as many as appropriate
CL Item
bacterial (bacterial)
CL Item
parasitic (parasitic)
CL Item
unknown (unknown)
ADDITIONAL NOTES IF APPLICABLE
Item
COMMENTS
text
IDENTIFICATION & SIGNATURE
Item
IDENTIFICATION & SIGNATURE
text