ID

17749

Description

ODM derived from 20pp EBMT Arthritis 14JIA forms on http://www.ebmt.org/

Link

http://www.ebmt.org/

Keywords

Versions (1)
  1. 10/2/16 10/2/16 -
Uploaded on

October 2, 2016

DOI

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License

Creative Commons BY-NC 3.0
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Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

English

Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

1 forms  
Team
Description

Team

Alias
UMLS CUI-1
C0019994
EBMT Centre Identification Code (CIC)
Description

EBMT Centre Identification Code

Data type

text

Alias
UMLS CUI [1]
C0802049
Name of the hospital
Description

Hospital

Data type

text

Alias
UMLS CUI [1]
C0019994
Unit
Description

Unit

Data type

text

Alias
UMLS CUI [1]
C1704729
Name of contact person
Description

Contact person

Data type

text

Alias
UMLS CUI [1]
C0337611
Telephone number of contact person
Description

Telephone

Data type

text

Alias
UMLS CUI [1]
C1515258
Fax number of contact number
Description

Fax

Data type

text

Alias
UMLS CUI [1]
C1549619
E-mail address of contact number
Description

E-mail

Data type

text

Alias
UMLS CUI [1]
C1705961
Date of this report
Description

Date of this report

Data type

date

Alias
UMLS CUI [1]
C1302584
Patient following national/ international study/ trial if yes specify name of study/ trial
Description

Study/ Trial

Data type

text

Alias
UMLS CUI [1]
C2348568
Name of study trial
Description

Name of study trial

Data type

text

Alias
UMLS CUI [1]
C2348560
Patient
Description

Patient

Alias
UMLS CUI-1
C0030705
Unique identification code (to be entered if patient previously reported)
Description

Unique identification code

Data type

text

Alias
UMLS CUI [1]
C1827636
Hospital Unique Patient number or code
Description

Hospital Unique Patient number or code

Data type

text

Alias
UMLS CUI [1]
C1827636
First name(s) - surname(s) (Registrations will not be accepted if this item is left blank)
Description

Initials

Data type

text

Alias
UMLS CUI [1]
C2986440
Patient Firstname (Registrations will not be accepted if this item is left blank)
Description

Patient Firstname

Data type

text

Alias
UMLS CUI [1]
C0421447
Patient Surname (Registrations will not be accepted if this item is left blank)
Description

Patient Surname

Data type

text

Alias
UMLS CUI [1]
C0421448
Date of birth
Description

Date of birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Gender of patient
Description

Gender

Data type

text

Alias
UMLS CUI [1]
C0079399
Patient's blood group (AB0)
Description

AB0 Group

Data type

text

Alias
UMLS CUI [1]
C0000778
Specification of blood group (Rhesus factor)
Description

Rhesus Factor

Data type

text

Alias
UMLS CUI [1]
C0427641
Disease
Description

Disease

Alias
UMLS CUI-1
C0012634
Date of diagnosis
Description

Date of diagnosis

Data type

date

Alias
UMLS CUI [1]
C2316983
Check the disease for which this transplant was performed (if other diagnosis, specify)
Description

Primary Disease Diagnosis

Data type

text

Alias
UMLS CUI [1]
C0277554
If use other diagnosis, specification
Description

Primary Disease Diagnosis

Data type

text

Alias
UMLS CUI [1]
C0277554
INITIAL DIAGNOSIS
Description

INITIAL DIAGNOSIS

SUBCLASSIFICATION AT DIAGNOSIS
Description

SUBCLASSIFICATION AT DIAGNOSIS

Data type

integer

Alias
UMLS CUI [1,1]
C0011900
UMLS CUI [1,2]
C0008902
DISEASE STATUS
Description

DISEASE STATUS

Data type

integer

Alias
UMLS CUI [1]
C0421168
LABORATORY DATA
Description

LABORATORY DATA

Data type

integer

Alias
UMLS CUI [1]
C0022885
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Description

AUTOANTIBODIES

Data type

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Description

Specify antibody

Data type

integer

Alias
UMLS CUI [1]
C0003241
FIRST LINE THERAPIES
Description

FIRST LINE THERAPIES

DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Description

DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS

Data type

boolean

Alias
UMLS CUI [1]
C0013227
UMLS CUI [2]
C0021081
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Description

Yes, mark appropriate box(es)

Data type

integer

Alias
UMLS CUI [1]
C0013227
UMLS CUI [2]
C0021081
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Data type

boolean

Alias
UMLS CUI [1]
C0040539
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

if yes, splease specify:

Data type

integer

Alias
UMLS CUI [1]
C0040539
DATE OF HSCT
Description

DATE OF HSCT

DATE OF TRANSPLANT
Description

DATE OF TRANSPLANT

Data type

date

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0011008
TRANSPLANT TYPE
Description

TRANSPLANT TYPE

Data type

integer

Alias
UMLS CUI [1]
C3840412
STATUS OF DISEASE AT MOBILISATION
Description

STATUS OF DISEASE AT MOBILISATION

Number of painful/tender joints
Description

Eular/ACR 28 joint count, which comprises bilateral shoulders, elbows, wrists, MCPs, PIPs and knees. Appendix B.2)

Data type

integer

Alias
UMLS CUI [1]
C0240094
Number of swollen/effused joints
Description

Eular/ACR 28 joint count, see above

Data type

integer

Alias
UMLS CUI [1]
C0152031
Pediatric EPM-Range of motion final score (0-3)
Description

(Appendix B.3)

Data type

text

Alias
UMLS CUI [1]
C0449820
Was morning stiffness present?
Description

Was morning stiffness present?

Data type

integer

Alias
UMLS CUI [1]
C0457086
Patient's weight
Description

Patient's weight

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Description

Patient's height

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
Patient's weight one year prior to time of mobilisation
Description

Patient's weight one year prior to time of mobilisation

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
Patient's height one year prior to time of mobilisation
Description

Patient's height one year prior to time of mobilisation

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
HAEMATOLOGICAL VALUES
Description

HAEMATOLOGICAL VALUES

Haemoglobin
Description

Haemoglobin

Data type

text

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Description

Erythrocyte sedimentation rate

Data type

integer

Measurement units
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Description

Platelets

Data type

integer

Measurement units
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Description

WBC

Data type

integer

Alias
UMLS CUI [1]
C0023508
CLINICAL AND LABORATORY DATA
Description

CLINICAL AND LABORATORY DATA

Serum creatinine
Description

Serum creatinine

Data type

integer

Measurement units
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Description

Serum AST

Data type

integer

Measurement units
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Description

Serum ALT

Data type

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Description

Serum albumin

Data type

integer

Measurement units
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Description

Serum alkaline phosphatase

Data type

integer

Measurement units
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Description

Total serum bilirubin

Data type

integer

Alias
UMLS CUI [1]
C1278039
C-reactive protein
Description

C-reactive protein

Data type

integer

Alias
UMLS CUI [1]
C0006560
AUTOANTIBODIES
Description

AUTOANTIBODIES

Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Description

Were tests for autoantibodies done between diagnosis and mobilisation/transplant?

Data type

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Description

Specify antibody

Data type

integer

RADIOGRAPHIC EVALUATION
Description

RADIOGRAPHIC EVALUATION

Were radiographic bone erosions present?
Description

Were radiographic bone erosions present?

Data type

integer

Alias
UMLS CUI [1]
C0587240
Was advanced skeletal age of affected joints noted radiographically?
Description

Was advanced skeletal age of affected joints noted radiographically?

Data type

integer

Alias
UMLS CUI [1]
C3661538
Presence of osteoporotic fractures
Description

Presence of osteoporotic fractures

Data type

integer

Alias
UMLS CUI [1]
C0521170
HEALTH ASSESSMENT
Description

HEALTH ASSESSMENT

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Description

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Data type

boolean

Alias
UMLS CUI [1]
C0451208
PATIENT’S SELF ASSESSMENT
Description

PATIENT’S SELF ASSESSMENT

Data type

integer

Alias
UMLS CUI [1]
C1256021
Childhood Health Assessment Questionnaire (CHAQ) completed?
Description

Childhood Health Assessment Questionnaire (CHAQ) completed?

Data type

integer

Alias
UMLS CUI [1]
C2732494
Specify range of possible scores for the CHAQ pain sub-scale
Description

Specify range of possible scores for the CHAQ pain sub-scale

Data type

integer

Alias
UMLS CUI [1]
C2960434
Specify range of possible scores for the CHAQ disability sub-scale
Description

Specify range of possible scores for the CHAQ disability sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
Specify range of possible scores for the CHAQ severity sub-scale
Description

Specify range of possible scores for the CHAQ severity sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
UMLS CUI [1,3]
C0439793
PHYSICIAN’S ASSESSMENT
Description

PHYSICIAN’S ASSESSMENT

Did the physician complete a Global Assessment of the patient’s state?
Description

Did the physician complete a Global Assessment of the patient’s state?

Data type

boolean

Alias
UMLS CUI [1]
C0281858
If yes: Specify range of possible scores for Physician Rated Global Assessment
Description

If yes: Specify range of possible scores for Physician Rated Global Assessment

Data type

integer

Alias
UMLS CUI [1]
C0281858
DISEASE RESPONSE TO THE MOBILISATION TUMRSA2
Description

DISEASE RESPONSE TO THE MOBILISATION TUMRSA2

Data type

integer

Alias
UMLS CUI [1]
C1704632
STATUS OF DISEASE AT HSCT
Description

STATUS OF DISEASE AT HSCT

Number of painful/tender joints
Description

Eular/ACR 28 joint count, which comprises bilateral shoulders, elbows, wrists, MCPs, PIPs and knees. Appendix B.2)

Data type

integer

Alias
UMLS CUI [1]
C0240094
Number of swollen/effused joints
Description

Eular/ACR 28 joint count, see above

Data type

integer

Alias
UMLS CUI [1]
C0152031
Pediatric EPM-Range of motion final score (0-3)
Description

(Appendix B.3)

Data type

text

Alias
UMLS CUI [1]
C0449820
Was morning stiffness present?
Description

Was morning stiffness present?

Data type

integer

Alias
UMLS CUI [1]
C0457086
Patient's weight
Description

Patient's weight

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Description

Patient's height

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
Patient's weight one year prior to time of mobilisation
Description

Patient's weight one year prior to time of mobilisation

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
Patient's height one year prior to time of mobilisation
Description

Patient's height one year prior to time of mobilisation

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
Haemoglobin
Description

Haemoglobin

Data type

text

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Description

Erythrocyte sedimentation rate

Data type

integer

Measurement units
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Description

Platelets

Data type

integer

Measurement units
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Description

WBC

Data type

integer

Alias
UMLS CUI [1]
C0023508
Serum creatinine
Description

Serum creatinine

Data type

integer

Measurement units
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Description

Serum AST

Data type

integer

Measurement units
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Description

Serum ALT

Data type

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Description

Serum albumin

Data type

integer

Measurement units
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Description

Serum alkaline phosphatase

Data type

integer

Measurement units
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Description

Total serum bilirubin

Data type

integer

Alias
UMLS CUI [1]
C1278039
C-reactive protein
Description

C-reactive protein

Data type

integer

Alias
UMLS CUI [1]
C0006560
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Description

Were tests for autoantibodies done between diagnosis and mobilisation/transplant?

Data type

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Description

Specify antibody

Data type

integer

Were radiographic bone erosions present?
Description

Were radiographic bone erosions present?

Data type

integer

Alias
UMLS CUI [1]
C0587240
Was advanced skeletal age of affected joints noted radiographically?
Description

Was advanced skeletal age of affected joints noted radiographically?

Data type

integer

Alias
UMLS CUI [1]
C3661538
Presence of osteoporotic fractures
Description

Presence of osteoporotic fractures

Data type

integer

Alias
UMLS CUI [1]
C0521170
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Description

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Data type

boolean

Alias
UMLS CUI [1]
C0451208
PATIENT’S SELF ASSESSMENT
Description

PATIENT’S SELF ASSESSMENT

Data type

integer

Alias
UMLS CUI [1]
C1256021
Childhood Health Assessment Questionnaire (CHAQ) completed?
Description

Childhood Health Assessment Questionnaire (CHAQ) completed?

Data type

integer

Alias
UMLS CUI [1]
C2732494
Specify range of possible scores for the CHAQ pain sub-scale
Description

Specify range of possible scores for the CHAQ pain sub-scale

Data type

integer

Alias
UMLS CUI [1]
C2960434
Specify range of possible scores for the CHAQ disability sub-scale
Description

Specify range of possible scores for the CHAQ disability sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
Specify range of possible scores for the CHAQ severity sub-scale
Description

Specify range of possible scores for the CHAQ severity sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
UMLS CUI [1,3]
C0439793
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Description

Yes, mark appropriate box(es)

Data type

integer

Alias
UMLS CUI [1]
C0013227
UMLS CUI [2]
C0021081
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Data type

boolean

Alias
UMLS CUI [1]
C0040539
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

if yes, splease specify:

Data type

integer

Alias
UMLS CUI [1]
C0040539
STATUS AT 100 DAYS POST-HSCT
Description

STATUS AT 100 DAYS POST-HSCT

Number of painful/tender joints
Description

Eular/ACR 28 joint count, which comprises bilateral shoulders, elbows, wrists, MCPs, PIPs and knees. Appendix B.2)

Data type

integer

Alias
UMLS CUI [1]
C0240094
Number of swollen/effused joints
Description

Eular/ACR 28 joint count, see above

Data type

integer

Alias
UMLS CUI [1]
C0152031
Pediatric EPM-Range of motion final score (0-3)
Description

(Appendix B.3)

Data type

text

Alias
UMLS CUI [1]
C0449820
Was morning stiffness present?
Description

Was morning stiffness present?

Data type

integer

Alias
UMLS CUI [1]
C0457086
Patient's weight
Description

Patient's weight

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Description

Patient's height

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
Patient's weight one year prior to time of mobilisation
Description

Patient's weight one year prior to time of mobilisation

Data type

integer

Measurement units
  • kg
Alias
UMLS CUI [1]
C0005910
Patient's height one year prior to time of mobilisation
Description

Patient's height one year prior to time of mobilisation

Data type

integer

Measurement units
  • cm
Alias
UMLS CUI [1]
C0005890
Haemoglobin
Description

Haemoglobin

Data type

text

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Description

Erythrocyte sedimentation rate

Data type

integer

Measurement units
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Description

Platelets

Data type

integer

Measurement units
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Description

WBC

Data type

integer

Alias
UMLS CUI [1]
C0023508
Serum creatinine
Description

Serum creatinine

Data type

integer

Measurement units
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Description

Serum AST

Data type

integer

Measurement units
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Description

Serum ALT

Data type

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Description

Serum albumin

Data type

integer

Measurement units
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Description

Serum alkaline phosphatase

Data type

integer

Measurement units
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Description

Total serum bilirubin

Data type

integer

Alias
UMLS CUI [1]
C1278039
C-reactive protein
Description

C-reactive protein

Data type

integer

Alias
UMLS CUI [1]
C0006560
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Description

Were tests for autoantibodies done between diagnosis and mobilisation/transplant?

Data type

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Description

Specify antibody

Data type

integer

Were radiographic bone erosions present?
Description

Were radiographic bone erosions present?

Data type

integer

Alias
UMLS CUI [1]
C0587240
Was advanced skeletal age of affected joints noted radiographically?
Description

Was advanced skeletal age of affected joints noted radiographically?

Data type

integer

Alias
UMLS CUI [1]
C3661538
Presence of osteoporotic fractures
Description

Presence of osteoporotic fractures

Data type

integer

Alias
UMLS CUI [1]
C0521170
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Description

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Data type

boolean

Alias
UMLS CUI [1]
C0451208
PATIENT’S SELF ASSESSMENT
Description

PATIENT’S SELF ASSESSMENT

Data type

integer

Alias
UMLS CUI [1]
C1256021
Childhood Health Assessment Questionnaire (CHAQ) completed?
Description

Childhood Health Assessment Questionnaire (CHAQ) completed?

Data type

integer

Alias
UMLS CUI [1]
C2732494
Specify range of possible scores for the CHAQ pain sub-scale
Description

Specify range of possible scores for the CHAQ pain sub-scale

Data type

integer

Alias
UMLS CUI [1]
C2960434
Specify range of possible scores for the CHAQ disability sub-scale
Description

Specify range of possible scores for the CHAQ disability sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
Specify range of possible scores for the CHAQ severity sub-scale
Description

Specify range of possible scores for the CHAQ severity sub-scale

Data type

integer

Alias
UMLS CUI [1,1]
C2960434
UMLS CUI [1,2]
C0459443
UMLS CUI [1,3]
C0439793
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Description

Yes, mark appropriate box(es)

Data type

integer

Alias
UMLS CUI [1]
C0013227
UMLS CUI [2]
C0021081
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Data type

boolean

Alias
UMLS CUI [1]
C0040539
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Description

if yes, splease specify:

Data type

integer

Alias
UMLS CUI [1]
C0040539
FORMS TO BE FILLED IN
Description

FORMS TO BE FILLED IN

TYPE OF TRANSPLANT
Description

TYPE OF TRANSPLANT

Data type

integer

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Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Team
C0019994 (UMLS CUI-1)
EBMT Centre Identification Code
Item
EBMT Centre Identification Code (CIC)
text
C0802049 (UMLS CUI [1])
Hospital
Item
Name of the hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
text
C1704729 (UMLS CUI [1])
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 number of contact number
text
C1549619 (UMLS CUI [1])
E-mail
Item
E-mail address of contact number
text
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 if yes specify name of study/ trial
text
C2348568 (UMLS CUI [1])
Study/ Trial
Code List
Patient following national/ international study/ trial if yes specify name of study/ trial
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Name of study trial
Item
Name of study trial
text
C2348560 (UMLS CUI [1])
Item Group
Patient
C0030705 (UMLS CUI-1)
Unique identification code
Item
Unique identification code (to be entered if patient previously reported)
text
C1827636 (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) (Registrations will not be accepted if this item is left blank)
text
C2986440 (UMLS CUI [1])
Patient Firstname
Item
Patient Firstname (Registrations will not be accepted if this item is left blank)
text
C0421447 (UMLS CUI [1])
Patient Surname
Item
Patient Surname (Registrations will not be accepted if this item is left blank)
text
C0421448 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Gender of patient
text
C0079399 (UMLS CUI [1])
Gender
Code List
Gender of patient
CL Item
Male (Male)
CL Item
Female (Female)
Item
Patient's blood group (AB0)
text
C0000778 (UMLS CUI [1])
AB0 Group
Code List
Patient's blood group (AB0)
CL Item
A (A)
CL Item
B (B)
CL Item
AB (AB)
CL Item
0 (0)
Item
Specification of blood group (Rhesus factor)
text
C0427641 (UMLS CUI [1])
Rhesus Factor
Code List
Specification of blood group (Rhesus factor)
CL Item
absent (absent)
CL Item
present (present)
CL Item
not evaluated (not evaluated)
Item Group
Disease
C0012634 (UMLS CUI-1)
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item
Check the disease for which this transplant was performed (if other diagnosis, specify)
text
C0277554 (UMLS CUI [1])
Primary Disease Diagnosis
Code List
Check the disease for which this transplant was performed (if other diagnosis, specify)
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Myelogenous (AML) (Myelogenous (AML))
CL Item
Lymphoblastic (ALL) (Lymphoblastic (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 (CLL) (Chronic Lymphocytic Leukaemia (CLL))
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 Tumor (Solid Tumor)
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
Histocytic Disorders (Histocytic 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
Haemoglobinopathy (Haemoglobinopathy)
CL Item
Other diagnosis (Other diagnosis)
Primary Disease Diagnosis
Item
If use other diagnosis, specification
text
C0277554 (UMLS CUI [1])
Item Group
INITIAL DIAGNOSIS
Item
SUBCLASSIFICATION AT DIAGNOSIS
integer
C0011900 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
SUBCLASSIFICATION AT DIAGNOSIS
Code List
SUBCLASSIFICATION AT DIAGNOSIS
CL Item
Systemic (1)
CL Item
Polyarticular Rheumatoid Arthritis with oligoarticular onset (2)
CL Item
Polyarticular Rheumatoid Arthritis with polyarticular onset (3)
CL Item
Other, specify: (4)
Item
DISEASE STATUS
integer
C0421168 (UMLS CUI [1])
DISEASE STATUS
Code List
DISEASE STATUS
CL Item
Systemic JIA with polyarticular course (1)
C1384600 (UMLS CUI-1)
CL Item
Schneider criteria fulfilled? (2)
C0314090 (UMLS CUI-1)
CL Item
Disease progression on therapy (3)
C0242656 (UMLS CUI-1)
CL Item
Corticosteroid dependency to control disease (4)
C0749012 (UMLS CUI-1)
Item
LABORATORY DATA
integer
C0022885 (UMLS CUI [1])
LABORATORY DATA
Code List
LABORATORY DATA
CL Item
Erythrocyte sedimentation rate (1)
C1176468 (UMLS CUI-1)
CL Item
C-reactive protein (2)
C0006560 (UMLS CUI-1)
AUTOANTIBODIES
Item
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
boolean
C0004358 (UMLS CUI [1])
Item
Specify antibody
integer
C0003241 (UMLS CUI [1])
Specify antibody
Code List
Specify antibody
CL Item
Anti-nuclear (ANA) (1)
C0003243 (UMLS CUI-1)
CL Item
Rheumatoid factor (2)
C0201660 (UMLS CUI-1)
CL Item
Other, specify (3)
C3845569 (UMLS CUI-1)
Item Group
FIRST LINE THERAPIES
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Item
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
boolean
C0013227 (UMLS CUI [1])
C0021081 (UMLS CUI [2])
Item
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
integer
C0013227 (UMLS CUI [1])
C0021081 (UMLS CUI [2])
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Code List
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
CL Item
Cyclophosphamide (1)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (2)
C0025677 (UMLS CUI-1)
CL Item
Cyclosporin-A (3)
C0010592 (UMLS CUI-1)
CL Item
Corticosteroids (4)
C0001617 (UMLS CUI-1)
CL Item
Non-steroidal anti-inflammatory (NSAIDS) (5)
C0003211 (UMLS CUI-1)
CL Item
Anti tumour necrosis factor (Etarnercept) (6)
C1562242 (UMLS CUI-1)
CL Item
Other drug or agent (7)
C0679904 (UMLS CUI-1)
CL Item
Unknown (8)
C0439673 (UMLS CUI-1)
CL Item
Other treatment (9)
C0087111 (UMLS CUI-1)
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Item
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
boolean
C0040539 (UMLS CUI [1])
Item
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
integer
C0040539 (UMLS CUI [1])
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Code List
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
CL Item
Cataracts (1)
C0086543 (UMLS CUI-1)
CL Item
Avascular necrosis of femoral head (2)
C0410480 (UMLS CUI-1)
CL Item
Severe hypertension (3)
C0020538 (UMLS CUI-1)
CL Item
Renal insufficiency (>30% increase in creatinine) (4)
C0035078 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (5)
C0521362 (UMLS CUI-1)
CL Item
Hepatic dysfunction (>3 fold increase in liver function tests (6)
C0086565 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (7)
C0521362 (UMLS CUI-1)
CL Item
Growth delay (8)
C0456070 (UMLS CUI-1)
CL Item
Other, specify (9)
C3845569 (UMLS CUI-1)
CL Item
Unknown (10)
C0439673 (UMLS CUI-1)
Item Group
DATE OF HSCT
DATE OF TRANSPLANT
Item
DATE OF TRANSPLANT
date
C0472699 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
TRANSPLANT TYPE
integer
C3840412 (UMLS CUI [1])
TRANSPLANT TYPE
Code List
TRANSPLANT TYPE
CL Item
Allogeneic (1)
C2242529 (UMLS CUI-1)
CL Item
Autologous: Mobilised (2)
C0439859 (UMLS CUI-1)
Item Group
STATUS OF DISEASE AT MOBILISATION
Item
Number of painful/tender joints
integer
C0240094 (UMLS CUI [1])
Number of painful/tender joints
Code List
Number of painful/tender joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Number of swollen/effused joints
integer
C0152031 (UMLS CUI [1])
Number of swollen/effused joints
Code List
Number of swollen/effused joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Pediatric EPM-Range of motion final score (0-3)
text
C0449820 (UMLS CUI [1])
Pediatric EPM-Range of motion final score (0-3)
Code List
Pediatric EPM-Range of motion final score (0-3)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Was morning stiffness present?
integer
C0457086 (UMLS CUI [1])
Was morning stiffness present?
Code List
Was morning stiffness present?
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Patient's weight
Item
Patient's weight
integer
C0005910 (UMLS CUI [1])
Item
Patient's height
integer
C0005890 (UMLS CUI [1])
Patient's height
Code List
Patient's height
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's weight one year prior to time of mobilisation
integer
C0005910 (UMLS CUI [1])
Patient's weight one year prior to time of mobilisation
Code List
Patient's weight one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's height one year prior to time of mobilisation
integer
C0005890 (UMLS CUI [1])
Patient's height one year prior to time of mobilisation
Code List
Patient's height one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item Group
HAEMATOLOGICAL VALUES
Item
Haemoglobin
text
C0518015 (UMLS CUI [1])
Haemoglobin
Code List
Haemoglobin
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Erythrocyte sedimentation rate
integer
C1176468 (UMLS CUI [1])
Erythrocyte sedimentation rate
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Platelets
Code List
Platelets
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
WBC
integer
C0023508 (UMLS CUI [1])
WBC
Code List
WBC
CL Item
Segs (1)
C0205122 (UMLS CUI-1)
CL Item
Bands (2)
C1882076 (UMLS CUI-1)
CL Item
Basophils (3)
C0200641 (UMLS CUI-1)
CL Item
Monocytes (4)
C0026473 (UMLS CUI-1)
CL Item
Eosinophils (5)
C0362902 (UMLS CUI-1)
Item Group
CLINICAL AND LABORATORY DATA
Item
Serum creatinine
integer
C0201976 (UMLS CUI [1])
Serum creatinine
Code List
Serum creatinine
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum AST
integer
C0004002 (UMLS CUI [1])
Serum AST
Code List
Serum AST
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum ALT
integer
C0001899 (UMLS CUI [1])
Serum ALT
Code List
Serum ALT
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum albumin
integer
C0036773 (UMLS CUI [1])
Serum albumin
Code List
Serum albumin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum alkaline phosphatase
integer
C0201850 (UMLS CUI [1])
Serum alkaline phosphatase
Code List
Serum alkaline phosphatase
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Total serum bilirubin
integer
C1278039 (UMLS CUI [1])
Total serum bilirubin
Code List
Total serum bilirubin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
C-reactive protein
integer
C0006560 (UMLS CUI [1])
C-reactive protein
Code List
C-reactive protein
CL Item
normal (1)
CL Item
elevated (2)
CL Item
not elevated (3)
CL Item
unknown (4)
Item Group
AUTOANTIBODIES
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Item
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
boolean
C0004358 (UMLS CUI [1])
Item
Specify antibody
integer
Specify antibody
Code List
Specify antibody
CL Item
Anti-nuclear (ANA) (1)
C0003243 (UMLS CUI-1)
CL Item
Rheumatoid factor (2)
C0201660 (UMLS CUI-1)
CL Item
Other, specify (3)
C3845569 (UMLS CUI-1)
Item Group
RADIOGRAPHIC EVALUATION
Item
Were radiographic bone erosions present?
integer
C0587240 (UMLS CUI [1])
Were radiographic bone erosions present?
Code List
Were radiographic bone erosions present?
CL Item
Negative (1)
C0205160 (UMLS CUI-1)
CL Item
Positive (2)
C1446409 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Was advanced skeletal age of affected joints noted radiographically?
integer
C3661538 (UMLS CUI [1])
Was advanced skeletal age of affected joints noted radiographically?
Code List
Was advanced skeletal age of affected joints noted radiographically?
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Presence of osteoporotic fractures
integer
C0521170 (UMLS CUI [1])
Presence of osteoporotic fractures
Code List
Presence of osteoporotic fractures
CL Item
Never (1)
C2003901 (UMLS CUI-1)
CL Item
Previously but not now (2)
C3242507 (UMLS CUI-1)
CL Item
Currently (3)
C0521116 (UMLS CUI-1)
CL Item
Not evaluated (4)
C3846720 (UMLS CUI-1)
CL Item
Unknown (5)
C0439673 (UMLS CUI-1)
Item Group
HEALTH ASSESSMENT
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Item
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
boolean
C0451208 (UMLS CUI [1])
PATIENT’S SELF ASSESSMENT
Item
PATIENT’S SELF ASSESSMENT
integer
C1256021 (UMLS CUI [1])
Item
Childhood Health Assessment Questionnaire (CHAQ) completed?
integer
C2732494 (UMLS CUI [1])
Childhood Health Assessment Questionnaire (CHAQ) completed?
Code List
Childhood Health Assessment Questionnaire (CHAQ) completed?
CL Item
Done (1)
CL Item
Not done (2)
CL Item
Unknown (3)
Item
Specify range of possible scores for the CHAQ pain sub-scale
integer
C2960434 (UMLS CUI [1])
Specify range of possible scores for the CHAQ pain sub-scale
Code List
Specify range of possible scores for the CHAQ pain sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ disability sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ disability sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ severity sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ severity sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item Group
PHYSICIAN’S ASSESSMENT
Did the physician complete a Global Assessment of the patient’s state?
Item
Did the physician complete a Global Assessment of the patient’s state?
boolean
C0281858 (UMLS CUI [1])
Item
If yes: Specify range of possible scores for Physician Rated Global Assessment
integer
C0281858 (UMLS CUI [1])
If yes: Specify range of possible scores for Physician Rated Global Assessment
Code List
If yes: Specify range of possible scores for Physician Rated Global Assessment
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
DISEASE RESPONSE TO THE MOBILISATION TUMRSA2
integer
C1704632 (UMLS CUI [1])
DISEASE RESPONSE TO THE MOBILISATION TUMRSA2
Code List
DISEASE RESPONSE TO THE MOBILISATION TUMRSA2
CL Item
Response (1)
CL Item
Transient (2)
CL Item
No response (3)
CL Item
Not evaluated (4)
Item Group
STATUS OF DISEASE AT HSCT
Item
Number of painful/tender joints
integer
C0240094 (UMLS CUI [1])
Number of painful/tender joints
Code List
Number of painful/tender joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Number of swollen/effused joints
integer
C0152031 (UMLS CUI [1])
Number of swollen/effused joints
Code List
Number of swollen/effused joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Pediatric EPM-Range of motion final score (0-3)
text
C0449820 (UMLS CUI [1])
Pediatric EPM-Range of motion final score (0-3)
Code List
Pediatric EPM-Range of motion final score (0-3)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Was morning stiffness present?
integer
C0457086 (UMLS CUI [1])
Was morning stiffness present?
Code List
Was morning stiffness present?
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Patient's weight
Item
Patient's weight
integer
C0005910 (UMLS CUI [1])
Item
Patient's height
integer
C0005890 (UMLS CUI [1])
Patient's height
Code List
Patient's height
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's weight one year prior to time of mobilisation
integer
C0005910 (UMLS CUI [1])
Patient's weight one year prior to time of mobilisation
Code List
Patient's weight one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's height one year prior to time of mobilisation
integer
C0005890 (UMLS CUI [1])
Patient's height one year prior to time of mobilisation
Code List
Patient's height one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Haemoglobin
text
C0518015 (UMLS CUI [1])
Haemoglobin
Code List
Haemoglobin
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Erythrocyte sedimentation rate
integer
C1176468 (UMLS CUI [1])
Erythrocyte sedimentation rate
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Platelets
Code List
Platelets
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
WBC
integer
C0023508 (UMLS CUI [1])
WBC
Code List
WBC
CL Item
Segs (1)
C0205122 (UMLS CUI-1)
CL Item
Bands (2)
C1882076 (UMLS CUI-1)
CL Item
Basophils (3)
C0200641 (UMLS CUI-1)
CL Item
Monocytes (4)
C0026473 (UMLS CUI-1)
CL Item
Eosinophils (5)
C0362902 (UMLS CUI-1)
Item
Serum creatinine
integer
C0201976 (UMLS CUI [1])
Serum creatinine
Code List
Serum creatinine
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum AST
integer
C0004002 (UMLS CUI [1])
Serum AST
Code List
Serum AST
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum ALT
integer
C0001899 (UMLS CUI [1])
Serum ALT
Code List
Serum ALT
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum albumin
integer
C0036773 (UMLS CUI [1])
Serum albumin
Code List
Serum albumin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum alkaline phosphatase
integer
C0201850 (UMLS CUI [1])
Serum alkaline phosphatase
Code List
Serum alkaline phosphatase
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Total serum bilirubin
integer
C1278039 (UMLS CUI [1])
Total serum bilirubin
Code List
Total serum bilirubin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
C-reactive protein
integer
C0006560 (UMLS CUI [1])
C-reactive protein
Code List
C-reactive protein
CL Item
normal (1)
CL Item
elevated (2)
CL Item
not elevated (3)
CL Item
unknown (4)
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Item
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
boolean
C0004358 (UMLS CUI [1])
Item
Specify antibody
integer
Specify antibody
Code List
Specify antibody
CL Item
Anti-nuclear (ANA) (1)
C0003243 (UMLS CUI-1)
CL Item
Rheumatoid factor (2)
C0201660 (UMLS CUI-1)
CL Item
Other, specify (3)
C3845569 (UMLS CUI-1)
Item
Were radiographic bone erosions present?
integer
C0587240 (UMLS CUI [1])
Were radiographic bone erosions present?
Code List
Were radiographic bone erosions present?
CL Item
Negative (1)
C0205160 (UMLS CUI-1)
CL Item
Positive (2)
C1446409 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Was advanced skeletal age of affected joints noted radiographically?
integer
C3661538 (UMLS CUI [1])
Was advanced skeletal age of affected joints noted radiographically?
Code List
Was advanced skeletal age of affected joints noted radiographically?
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Presence of osteoporotic fractures
integer
C0521170 (UMLS CUI [1])
Presence of osteoporotic fractures
Code List
Presence of osteoporotic fractures
CL Item
Never (1)
C2003901 (UMLS CUI-1)
CL Item
Previously but not now (2)
C3242507 (UMLS CUI-1)
CL Item
Currently (3)
C0521116 (UMLS CUI-1)
CL Item
Not evaluated (4)
C3846720 (UMLS CUI-1)
CL Item
Unknown (5)
C0439673 (UMLS CUI-1)
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Item
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
boolean
C0451208 (UMLS CUI [1])
PATIENT’S SELF ASSESSMENT
Item
PATIENT’S SELF ASSESSMENT
integer
C1256021 (UMLS CUI [1])
Item
Childhood Health Assessment Questionnaire (CHAQ) completed?
integer
C2732494 (UMLS CUI [1])
Childhood Health Assessment Questionnaire (CHAQ) completed?
Code List
Childhood Health Assessment Questionnaire (CHAQ) completed?
CL Item
Done (1)
CL Item
Not done (2)
CL Item
Unknown (3)
Item
Specify range of possible scores for the CHAQ pain sub-scale
integer
C2960434 (UMLS CUI [1])
Specify range of possible scores for the CHAQ pain sub-scale
Code List
Specify range of possible scores for the CHAQ pain sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ disability sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ disability sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ severity sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ severity sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
integer
C0013227 (UMLS CUI [1])
C0021081 (UMLS CUI [2])
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Code List
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
CL Item
Cyclophosphamide (1)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (2)
C0025677 (UMLS CUI-1)
CL Item
Cyclosporin-A (3)
C0010592 (UMLS CUI-1)
CL Item
Corticosteroids (4)
C0001617 (UMLS CUI-1)
CL Item
Non-steroidal anti-inflammatory (NSAIDS) (5)
C0003211 (UMLS CUI-1)
CL Item
Anti tumour necrosis factor (Etarnercept) (6)
C1562242 (UMLS CUI-1)
CL Item
Other drug or agent (7)
C0679904 (UMLS CUI-1)
CL Item
Unknown (8)
C0439673 (UMLS CUI-1)
CL Item
Other treatment (9)
C0087111 (UMLS CUI-1)
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Item
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
boolean
C0040539 (UMLS CUI [1])
Item
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
integer
C0040539 (UMLS CUI [1])
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Code List
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
CL Item
Cataracts (1)
C0086543 (UMLS CUI-1)
CL Item
Avascular necrosis of femoral head (2)
C0410480 (UMLS CUI-1)
CL Item
Severe hypertension (3)
C0020538 (UMLS CUI-1)
CL Item
Renal insufficiency (>30% increase in creatinine) (4)
C0035078 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (5)
C0521362 (UMLS CUI-1)
CL Item
Hepatic dysfunction (>3 fold increase in liver function tests (6)
C0086565 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (7)
C0521362 (UMLS CUI-1)
CL Item
Growth delay (8)
C0456070 (UMLS CUI-1)
CL Item
Other, specify (9)
C3845569 (UMLS CUI-1)
CL Item
Unknown (10)
C0439673 (UMLS CUI-1)
Item Group
STATUS AT 100 DAYS POST-HSCT
Item
Number of painful/tender joints
integer
C0240094 (UMLS CUI [1])
Number of painful/tender joints
Code List
Number of painful/tender joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Number of swollen/effused joints
integer
C0152031 (UMLS CUI [1])
Number of swollen/effused joints
Code List
Number of swollen/effused joints
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Pediatric EPM-Range of motion final score (0-3)
text
C0449820 (UMLS CUI [1])
Pediatric EPM-Range of motion final score (0-3)
Code List
Pediatric EPM-Range of motion final score (0-3)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Was morning stiffness present?
integer
C0457086 (UMLS CUI [1])
Was morning stiffness present?
Code List
Was morning stiffness present?
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Patient's weight
Item
Patient's weight
integer
C0005910 (UMLS CUI [1])
Item
Patient's height
integer
C0005890 (UMLS CUI [1])
Patient's height
Code List
Patient's height
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's weight one year prior to time of mobilisation
integer
C0005910 (UMLS CUI [1])
Patient's weight one year prior to time of mobilisation
Code List
Patient's weight one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Patient's height one year prior to time of mobilisation
integer
C0005890 (UMLS CUI [1])
Patient's height one year prior to time of mobilisation
Code List
Patient's height one year prior to time of mobilisation
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Haemoglobin
text
C0518015 (UMLS CUI [1])
Haemoglobin
Code List
Haemoglobin
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Erythrocyte sedimentation rate
integer
C1176468 (UMLS CUI [1])
Erythrocyte sedimentation rate
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Platelets
Code List
Platelets
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
WBC
integer
C0023508 (UMLS CUI [1])
WBC
Code List
WBC
CL Item
Segs (1)
C0205122 (UMLS CUI-1)
CL Item
Bands (2)
C1882076 (UMLS CUI-1)
CL Item
Basophils (3)
C0200641 (UMLS CUI-1)
CL Item
Monocytes (4)
C0026473 (UMLS CUI-1)
CL Item
Eosinophils (5)
C0362902 (UMLS CUI-1)
Item
Serum creatinine
integer
C0201976 (UMLS CUI [1])
Serum creatinine
Code List
Serum creatinine
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum AST
integer
C0004002 (UMLS CUI [1])
Serum AST
Code List
Serum AST
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum ALT
integer
C0001899 (UMLS CUI [1])
Serum ALT
Code List
Serum ALT
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum albumin
integer
C0036773 (UMLS CUI [1])
Serum albumin
Code List
Serum albumin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Serum alkaline phosphatase
integer
C0201850 (UMLS CUI [1])
Serum alkaline phosphatase
Code List
Serum alkaline phosphatase
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Total serum bilirubin
integer
C1278039 (UMLS CUI [1])
Total serum bilirubin
Code List
Total serum bilirubin
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
C-reactive protein
integer
C0006560 (UMLS CUI [1])
C-reactive protein
Code List
C-reactive protein
CL Item
normal (1)
CL Item
elevated (2)
CL Item
not elevated (3)
CL Item
unknown (4)
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
Item
Were tests for autoantibodies done between diagnosis and mobilisation/transplant?
boolean
C0004358 (UMLS CUI [1])
Item
Specify antibody
integer
Specify antibody
Code List
Specify antibody
CL Item
Anti-nuclear (ANA) (1)
C0003243 (UMLS CUI-1)
CL Item
Rheumatoid factor (2)
C0201660 (UMLS CUI-1)
CL Item
Other, specify (3)
C3845569 (UMLS CUI-1)
Item
Were radiographic bone erosions present?
integer
C0587240 (UMLS CUI [1])
Were radiographic bone erosions present?
Code List
Were radiographic bone erosions present?
CL Item
Negative (1)
C0205160 (UMLS CUI-1)
CL Item
Positive (2)
C1446409 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Was advanced skeletal age of affected joints noted radiographically?
integer
C3661538 (UMLS CUI [1])
Was advanced skeletal age of affected joints noted radiographically?
Code List
Was advanced skeletal age of affected joints noted radiographically?
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Presence of osteoporotic fractures
integer
C0521170 (UMLS CUI [1])
Presence of osteoporotic fractures
Code List
Presence of osteoporotic fractures
CL Item
Never (1)
C2003901 (UMLS CUI-1)
CL Item
Previously but not now (2)
C3242507 (UMLS CUI-1)
CL Item
Currently (3)
C0521116 (UMLS CUI-1)
CL Item
Not evaluated (4)
C3846720 (UMLS CUI-1)
CL Item
Unknown (5)
C0439673 (UMLS CUI-1)
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Item
HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
boolean
C0451208 (UMLS CUI [1])
PATIENT’S SELF ASSESSMENT
Item
PATIENT’S SELF ASSESSMENT
integer
C1256021 (UMLS CUI [1])
Item
Childhood Health Assessment Questionnaire (CHAQ) completed?
integer
C2732494 (UMLS CUI [1])
Childhood Health Assessment Questionnaire (CHAQ) completed?
Code List
Childhood Health Assessment Questionnaire (CHAQ) completed?
CL Item
Done (1)
CL Item
Not done (2)
CL Item
Unknown (3)
Item
Specify range of possible scores for the CHAQ pain sub-scale
integer
C2960434 (UMLS CUI [1])
Specify range of possible scores for the CHAQ pain sub-scale
Code List
Specify range of possible scores for the CHAQ pain sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ disability sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ disability sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
Specify range of possible scores for the CHAQ severity sub-scale
integer
C2960434 (UMLS CUI [1,1])
C0459443 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Specify range of possible scores for the CHAQ disability sub-scale
Code List
Specify range of possible scores for the CHAQ severity sub-scale
CL Item
Patient’s score (1)
C2960025 (UMLS CUI-1)
CL Item
Worst possible score (2)
C0449820 (UMLS CUI-1)
C1522166 (UMLS CUI-2)
CL Item
Best possible score (3)
C0449820 (UMLS CUI-1)
C1299381 (UMLS CUI-2)
Item
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
integer
C0013227 (UMLS CUI [1])
C0021081 (UMLS CUI [2])
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Code List
DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
CL Item
Cyclophosphamide (1)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (2)
C0025677 (UMLS CUI-1)
CL Item
Cyclosporin-A (3)
C0010592 (UMLS CUI-1)
CL Item
Corticosteroids (4)
C0001617 (UMLS CUI-1)
CL Item
Non-steroidal anti-inflammatory (NSAIDS) (5)
C0003211 (UMLS CUI-1)
CL Item
Anti tumour necrosis factor (Etarnercept) (6)
C1562242 (UMLS CUI-1)
CL Item
Other drug or agent (7)
C0679904 (UMLS CUI-1)
CL Item
Unknown (8)
C0439673 (UMLS CUI-1)
CL Item
Other treatment (9)
C0087111 (UMLS CUI-1)
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Item
COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
boolean
C0040539 (UMLS CUI [1])
Item
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
integer
C0040539 (UMLS CUI [1])
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
Code List
Please specify: COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT
CL Item
Cataracts (1)
C0086543 (UMLS CUI-1)
CL Item
Avascular necrosis of femoral head (2)
C0410480 (UMLS CUI-1)
CL Item
Severe hypertension (3)
C0020538 (UMLS CUI-1)
CL Item
Renal insufficiency (>30% increase in creatinine) (4)
C0035078 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (5)
C0521362 (UMLS CUI-1)
CL Item
Hepatic dysfunction (>3 fold increase in liver function tests (6)
C0086565 (UMLS CUI-1)
CL Item
Severe gastrointestinal (GI) toxicity, specify (7)
C0521362 (UMLS CUI-1)
CL Item
Growth delay (8)
C0456070 (UMLS CUI-1)
CL Item
Other, specify (9)
C3845569 (UMLS CUI-1)
CL Item
Unknown (10)
C0439673 (UMLS CUI-1)
Item Group
FORMS TO BE FILLED IN
Item
TYPE OF TRANSPLANT
integer
TYPE OF TRANSPLANT
Code List
TYPE OF TRANSPLANT
CL Item
AUTOgraft (1)
C0040736 (UMLS CUI-1)
CL Item
ALLOgraft (2)
C0040739 (UMLS CUI-1)
CL Item
other (3)
C0205394 (UMLS CUI-1)
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