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Informações:
Falhas:
ID
16853
Descrição
ODM form derived from 119pp EBMT SLE 16SLE please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx
Link
Palavras-chave
Versões (3)
- 21/07/2016 21/07/2016 -
- 10/08/2016 10/08/2016 -
- 17/09/2021 17/09/2021 -
Transferido a
10 de agosto de 2016
DOI
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Licença
Creative Commons BY-NC 3.0
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Systemic lupus erythematosus EBMT General Information Form
Systemic lupus erythematosus EBMT General Information Form
- StudyEvent: ODM
Similar models
Systemic lupus erythematosus EBMT General Information Form
- StudyEvent: ODM
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de dados
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
Name of contact person
text
C0337611 (UMLS CUI [1])
Telephone
Item
Telephone number of contact person
text
C1515258 (UMLS CUI [1])
Fax
Item
Fax
integer
C1549619 (UMLS CUI [1])
E-Mail
Item
E-Mail
integer
C1705961 (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)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
CL Item
unknown (3)
C0439673 (UMLS CUI-1)
Name of study / trial
Item
Name of study / trial
text
C0008976 (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])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
CL Item
Male (1)
C1706180 (UMLS CUI-1)
CL Item
Female (2)
C0015780 (UMLS CUI-1)
ABO Group
Item
ABO Group
integer
C0000778 (UMLS CUI [1])
CL Item
Absent (1)
C0332197 (UMLS CUI-1)
CL Item
Present (2)
C0150312 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item
Primary Disease Diagnosis: Check the disease for which this transplant was performed
integer
C0277554 (UMLS CUI [1])
Code List
Primary Disease Diagnosis: Check the disease for which this transplant was performed
CL Item
Acute Leukaemia (Acute Leukaemia)
C0085669 (UMLS CUI-1)
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
C0023449 (UMLS CUI-1)
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
C0023467 (UMLS CUI-1)
CL Item
Autoimmune disease (Autoimmune disease)
C0004364 (UMLS CUI-1)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
C0002874 (UMLS CUI-1)
CL Item
Chronic Leukaemia (Chronic Leukaemia)
C0856053 (UMLS CUI-1)
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
C0023434 (UMLS CUI-1)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
C0023473 (UMLS CUI-1)
CL Item
Haemoglobinopathy (Haemoglobinopathiy)
C0019045 (UMLS CUI-1)
CL Item
Histiocytic disorders (Histiocytic disorders)
C0398597 (UMLS CUI-1)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
C0019829 (UMLS CUI-1)
CL Item
Inherited disorders (Inherited disorders)
C0019247 (UMLS CUI-1)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
C1444841 (UMLS CUI-1)
CL Item
Lymphoma (Lymphoma)
C0024299 (UMLS CUI-1)
CL Item
MD/ MPN (MD/ MPN)
C1292778 (UMLS CUI-1)
CL Item
MDS (MDS)
C3463824 (UMLS CUI-1)
CL Item
Metabolic disorders (Metabolic disorders)
C0025517 (UMLS CUI-1)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
C0026769 (UMLS CUI-1)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
C0280450 (UMLS CUI-1)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
C0026764 (UMLS CUI-1)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
C1333046 (UMLS CUI-1)
CL Item
Non Hodgkin (Non Hodgkin)
C0024305 (UMLS CUI-1)
CL Item
Other diagnosis (Other diagnosis)
C0205394 (UMLS CUI-1)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
C0398686 (UMLS CUI-1)
CL Item
Secondary Acute Leukaemia (do not use if transformed from MDS/MPN) (Secondary Acute Leukaemia (do not use if transformed from MDS/MPN))
C0856053 (UMLS CUI-1)
CL Item
Solid Tumour (Solid Tumour)
C0006826 (UMLS CUI-1)
CL Item
Systemic Lupus (Systemic Lupus)
C0024141 (UMLS CUI-1)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
C0036421 (UMLS CUI-1)
Name of Referring Physician
Item
Name of Referring Physician
integer
C1709880 (UMLS CUI [1])
Address
Item
Address
integer
C0421449 (UMLS CUI [1])
Fax
Item
Fax
integer
C1549619 (UMLS CUI [1])
Email
Item
Email
integer
C0013849 (UMLS CUI [1])
Item
Has the information requested in this section been submitted with a previous transplant registration?
integer
C0585727 (UMLS CUI [1])
Code List
Has the information requested in this section been submitted with a previous transplant registration?
CL Item
Yes: proceed to “Status of Disease at mobilisation” on page 3 (Yes: proceed to “Status of Disease at mobilisation” on page 3)
CL Item
No: proceed with this section (No: proceed with this section)
Item Group
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated )
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes )
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
Date started
Item
Date started
date
C3173309 (UMLS CUI [1])
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
no (0)
CL Item
yes (1)
CL Item
unknown (9)
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)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Item
Intravenous immune globulin (IVIG)
integer
C0085297 (UMLS CUI [1])
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Other drugs
Item
Other drugs, please specify
boolean
C2729346 (UMLS CUI [1])
Date of Transplant
Item
Date of Transplant
date
C0472699 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
CL Item
Allogeneic (1)
C2242529 (UMLS CUI-1)
CL Item
Autologous (2)
C0194037 (UMLS CUI-1)
Date of 1st collection or pheresis
Item
Autologous
date
Item
Was lupus nephritis present at anytime prior to mobilisation?
integer
C0024143 (UMLS CUI [1])
Code List
Was lupus nephritis present at anytime prior to mobilisation?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
date of most recent renal biopsy
Item
if renal biopsy done, date of most recent renal biopsy
date
C0194073 (UMLS CUI [1,1])
C2963433 (UMLS CUI [1,2])
C2963433 (UMLS CUI [1,2])
CL Item
Normal (I Normal)
C0205307 (UMLS CUI-1)
CL Item
Mesangial (II Mesangial)
C0227651 (UMLS CUI-1)
CL Item
Focal proliferative (III Focal proliferative)
C1265837 (UMLS CUI-1)
CL Item
Diffuse proliferative (IV Diffuse proliferative)
C0744422 (UMLS CUI-1)
CL Item
Membranous (V Membranous)
C0017665 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
Grade Histology
Item
Grade Histology: if other, please specify
text
C1317415 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
Item Group
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
CL Item
Yes (Yes )
CL Item
No (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
CL Item
No (2)
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
ESR
Item
Erythrocyte Sedimentation Rate
integer
C1176468 (UMLS CUI [1])
CL Item
Not evaluated (1)
CL Item
Unknown (2)
platelets
Item
Platelets
integer
C0005821 (UMLS CUI [1])
WBC
Item
WBC
float
C0023508 (UMLS CUI [1])
Serumcreatinine
Item
Serum creatinine
float
C0201976 (UMLS CUI [1])
Creatinine Clearance
Item
Creatinine Clearance
float
C0373595 (UMLS CUI [1])
Total urinary protein excretion (mg/24 h)
Item
Total urinary protein excretion (mg/24 h)
float
C3897352 (UMLS CUI [1])
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
Normal (1)
CL Item
Elevated (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Normal (1)
CL Item
Elevated (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Normal (1)
CL Item
Elevated (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
antinuclear antibody (ANA) test
integer
C0003243 (UMLS CUI [1])
CL Item
Normal (1)
CL Item
Elevated (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Normal (Normal )
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
CL Item
Normal (Normal )
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
CL Item
Normal (Normal )
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
CL Item
Normal (Normal )
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item Group
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Physical Functioning
Item
Physical Functioning
float
C0516981 (UMLS CUI [1])
Role Functioning-Physical
Item
Role Functioning-Physical
float
C0516981 (UMLS CUI [1])
Role Functioning-Emotional
Item
Role Functioning-Emotional
float
C0013987 (UMLS CUI [1])
Social Functioning
Item
Social Functioning
float
C2585826 (UMLS CUI [1])
Bodily Pain
Item
Bodily Pain
float
C3890602 (UMLS CUI [1])
Mental Health
Item
Mental Health
float
C0025353 (UMLS CUI [1])
Vitality
Item
Vitality
float
C0424589 (UMLS CUI [1])
General Health
Item
General Health
float
C0516984 (UMLS CUI [1])
Item
Did the patient complete a Health Assessment Questionnaire (HAQ)?
integer
C0451208 (UMLS CUI [1])
Code List
Did the patient complete a Health Assessment Questionnaire (HAQ)?
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
health score
Item
Patient’s score
float
C2960025 (UMLS CUI [1])
Worst possible score
Item
Worst possible score
float
C0449820 (UMLS CUI [1,1])
C1522166 (UMLS CUI [1,2])
C1522166 (UMLS CUI [1,2])
Best possible score
Item
Best possible score
float
C0449820 (UMLS CUI [1,1])
C1299381 (UMLS CUI [1,2])
C1299381 (UMLS CUI [1,2])
Item
Was lupus nephritis present at anytime prior to HSCT?
integer
C0024143 (UMLS CUI [1])
Code List
Was lupus nephritis present at anytime prior to HSCT?
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Was lupus nephritis present at anytime prior to HSCT?
Item
if yes, date of most recent renal biopsy
date
C0194073 (UMLS CUI [1])
CL Item
I Normal (I Normal)
CL Item
II Mesangial (II Mesangial)
CL Item
III Focal proliferative (III Focal proliferative)
CL Item
IV Diffuse proliferative (IV Diffuse proliferative)
CL Item
V Membranous (V Membranous)
CL Item
Other, (Other,)
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
ADDITIONAL DISEASE TREATMENT
Item
ADDITIONAL DISEASE TREATMENT
boolean
C1706712 (UMLS CUI [1])
Item
TYPE OF TRANSPLANT
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
C0040739 (UMLS CUI [1,2])
CL Item
AUTOgraft, proceed to Autograft form (1)
C0040736 (UMLS CUI-1)
CL Item
ALLOgraft or Syngeneic graft, proceed to Allograft form (2)
C0040739 (UMLS CUI-1)