ID

17749

Beschreibung

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

Link

http://www.ebmt.org/

Stichworte

Versionen (1)
  1. 02.10.16 02.10.16 -
Hochgeladen am

2. Oktober 2016

DOI

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Lizenz

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

Englisch

Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

1 Formulare  
Team
Beschreibung

Team

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

EBMT Centre Identification Code

Datentyp

text

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

Hospital

Datentyp

text

Alias
UMLS CUI [1]
C0019994
Unit
Beschreibung

Unit

Datentyp

text

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

Contact person

Datentyp

text

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

Telephone

Datentyp

text

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

Fax

Datentyp

text

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

E-mail

Datentyp

text

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

Date of this report

Datentyp

date

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

Study/ Trial

Datentyp

text

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

Name of study trial

Datentyp

text

Alias
UMLS CUI [1]
C2348560
Patient
Beschreibung

Patient

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

Unique identification code

Datentyp

text

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

Hospital Unique Patient number or code

Datentyp

text

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

Initials

Datentyp

text

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

Patient Firstname

Datentyp

text

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

Patient Surname

Datentyp

text

Alias
UMLS CUI [1]
C0421448
Date of birth
Beschreibung

Date of birth

Datentyp

date

Alias
UMLS CUI [1]
C0421451
Gender of patient
Beschreibung

Gender

Datentyp

text

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

AB0 Group

Datentyp

text

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

Rhesus Factor

Datentyp

text

Alias
UMLS CUI [1]
C0427641
Disease
Beschreibung

Disease

Alias
UMLS CUI-1
C0012634
Date of diagnosis
Beschreibung

Date of diagnosis

Datentyp

date

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

Primary Disease Diagnosis

Datentyp

text

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

Primary Disease Diagnosis

Datentyp

text

Alias
UMLS CUI [1]
C0277554
INITIAL DIAGNOSIS
Beschreibung

INITIAL DIAGNOSIS

SUBCLASSIFICATION AT DIAGNOSIS
Beschreibung

SUBCLASSIFICATION AT DIAGNOSIS

Datentyp

integer

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

DISEASE STATUS

Datentyp

integer

Alias
UMLS CUI [1]
C0421168
LABORATORY DATA
Beschreibung

LABORATORY DATA

Datentyp

integer

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

AUTOANTIBODIES

Datentyp

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Beschreibung

Specify antibody

Datentyp

integer

Alias
UMLS CUI [1]
C0003241
FIRST LINE THERAPIES
Beschreibung

FIRST LINE THERAPIES

DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS
Beschreibung

DISEASE MODIFYING DRUGS AND IMMUNOSUPPRESSANTS

Datentyp

boolean

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

Yes, mark appropriate box(es)

Datentyp

integer

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

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Datentyp

boolean

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

if yes, splease specify:

Datentyp

integer

Alias
UMLS CUI [1]
C0040539
DATE OF HSCT
Beschreibung

DATE OF HSCT

DATE OF TRANSPLANT
Beschreibung

DATE OF TRANSPLANT

Datentyp

date

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

TRANSPLANT TYPE

Datentyp

integer

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

STATUS OF DISEASE AT MOBILISATION

Number of painful/tender joints
Beschreibung

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

Datentyp

integer

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

Eular/ACR 28 joint count, see above

Datentyp

integer

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

(Appendix B.3)

Datentyp

text

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

Was morning stiffness present?

Datentyp

integer

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

Patient's weight

Datentyp

integer

Maßeinheiten
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Beschreibung

Patient's height

Datentyp

integer

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

Patient's weight one year prior to time of mobilisation

Datentyp

integer

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

Patient's height one year prior to time of mobilisation

Datentyp

integer

Maßeinheiten
  • cm
Alias
UMLS CUI [1]
C0005890
HAEMATOLOGICAL VALUES
Beschreibung

HAEMATOLOGICAL VALUES

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

text

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Beschreibung

Erythrocyte sedimentation rate

Datentyp

integer

Maßeinheiten
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Beschreibung

Platelets

Datentyp

integer

Maßeinheiten
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Beschreibung

WBC

Datentyp

integer

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

CLINICAL AND LABORATORY DATA

Serum creatinine
Beschreibung

Serum creatinine

Datentyp

integer

Maßeinheiten
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Beschreibung

Serum AST

Datentyp

integer

Maßeinheiten
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Beschreibung

Serum ALT

Datentyp

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Beschreibung

Serum albumin

Datentyp

integer

Maßeinheiten
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Beschreibung

Serum alkaline phosphatase

Datentyp

integer

Maßeinheiten
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Beschreibung

Total serum bilirubin

Datentyp

integer

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

C-reactive protein

Datentyp

integer

Alias
UMLS CUI [1]
C0006560
AUTOANTIBODIES
Beschreibung

AUTOANTIBODIES

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

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

Datentyp

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Beschreibung

Specify antibody

Datentyp

integer

RADIOGRAPHIC EVALUATION
Beschreibung

RADIOGRAPHIC EVALUATION

Were radiographic bone erosions present?
Beschreibung

Were radiographic bone erosions present?

Datentyp

integer

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

Was advanced skeletal age of affected joints noted radiographically?

Datentyp

integer

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

Presence of osteoporotic fractures

Datentyp

integer

Alias
UMLS CUI [1]
C0521170
HEALTH ASSESSMENT
Beschreibung

HEALTH ASSESSMENT

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED
Beschreibung

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Datentyp

boolean

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

PATIENT’S SELF ASSESSMENT

Datentyp

integer

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

Childhood Health Assessment Questionnaire (CHAQ) completed?

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

PHYSICIAN’S ASSESSMENT

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

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

Datentyp

boolean

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

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

Datentyp

integer

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

DISEASE RESPONSE TO THE MOBILISATION TUMRSA2

Datentyp

integer

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

STATUS OF DISEASE AT HSCT

Number of painful/tender joints
Beschreibung

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

Datentyp

integer

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

Eular/ACR 28 joint count, see above

Datentyp

integer

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

(Appendix B.3)

Datentyp

text

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

Was morning stiffness present?

Datentyp

integer

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

Patient's weight

Datentyp

integer

Maßeinheiten
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Beschreibung

Patient's height

Datentyp

integer

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

Patient's weight one year prior to time of mobilisation

Datentyp

integer

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

Patient's height one year prior to time of mobilisation

Datentyp

integer

Maßeinheiten
  • cm
Alias
UMLS CUI [1]
C0005890
Haemoglobin
Beschreibung

Haemoglobin

Datentyp

text

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Beschreibung

Erythrocyte sedimentation rate

Datentyp

integer

Maßeinheiten
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Beschreibung

Platelets

Datentyp

integer

Maßeinheiten
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Beschreibung

WBC

Datentyp

integer

Alias
UMLS CUI [1]
C0023508
Serum creatinine
Beschreibung

Serum creatinine

Datentyp

integer

Maßeinheiten
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Beschreibung

Serum AST

Datentyp

integer

Maßeinheiten
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Beschreibung

Serum ALT

Datentyp

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Beschreibung

Serum albumin

Datentyp

integer

Maßeinheiten
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Beschreibung

Serum alkaline phosphatase

Datentyp

integer

Maßeinheiten
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Beschreibung

Total serum bilirubin

Datentyp

integer

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

C-reactive protein

Datentyp

integer

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

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

Datentyp

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Beschreibung

Specify antibody

Datentyp

integer

Were radiographic bone erosions present?
Beschreibung

Were radiographic bone erosions present?

Datentyp

integer

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

Was advanced skeletal age of affected joints noted radiographically?

Datentyp

integer

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

Presence of osteoporotic fractures

Datentyp

integer

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

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Datentyp

boolean

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

PATIENT’S SELF ASSESSMENT

Datentyp

integer

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

Childhood Health Assessment Questionnaire (CHAQ) completed?

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

Yes, mark appropriate box(es)

Datentyp

integer

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

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Datentyp

boolean

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

if yes, splease specify:

Datentyp

integer

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

STATUS AT 100 DAYS POST-HSCT

Number of painful/tender joints
Beschreibung

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

Datentyp

integer

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

Eular/ACR 28 joint count, see above

Datentyp

integer

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

(Appendix B.3)

Datentyp

text

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

Was morning stiffness present?

Datentyp

integer

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

Patient's weight

Datentyp

integer

Maßeinheiten
  • kg
Alias
UMLS CUI [1]
C0005910
kg
Patient's height
Beschreibung

Patient's height

Datentyp

integer

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

Patient's weight one year prior to time of mobilisation

Datentyp

integer

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

Patient's height one year prior to time of mobilisation

Datentyp

integer

Maßeinheiten
  • cm
Alias
UMLS CUI [1]
C0005890
Haemoglobin
Beschreibung

Haemoglobin

Datentyp

text

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0518015
Erythrocyte sedimentation rate
Beschreibung

Erythrocyte sedimentation rate

Datentyp

integer

Maßeinheiten
  • mm/hr
Alias
UMLS CUI [1]
C1176468
Platelets
Beschreibung

Platelets

Datentyp

integer

Maßeinheiten
  • 109/L
Alias
UMLS CUI [1]
C0005821
WBC
Beschreibung

WBC

Datentyp

integer

Alias
UMLS CUI [1]
C0023508
Serum creatinine
Beschreibung

Serum creatinine

Datentyp

integer

Maßeinheiten
  • mol/l
Alias
UMLS CUI [1]
C0201976
Serum AST
Beschreibung

Serum AST

Datentyp

integer

Maßeinheiten
  • IU/l
Alias
UMLS CUI [1]
C0004002
Serum ALT
Beschreibung

Serum ALT

Datentyp

integer

Alias
UMLS CUI [1]
C0001899
Serum albumin
Beschreibung

Serum albumin

Datentyp

integer

Maßeinheiten
  • g/dl
Alias
UMLS CUI [1]
C0036773
Serum alkaline phosphatase
Beschreibung

Serum alkaline phosphatase

Datentyp

integer

Maßeinheiten
  • U/l
Alias
UMLS CUI [1]
C0201850
Total serum bilirubin
Beschreibung

Total serum bilirubin

Datentyp

integer

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

C-reactive protein

Datentyp

integer

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

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

Datentyp

boolean

Alias
UMLS CUI [1]
C0004358
Specify antibody
Beschreibung

Specify antibody

Datentyp

integer

Were radiographic bone erosions present?
Beschreibung

Were radiographic bone erosions present?

Datentyp

integer

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

Was advanced skeletal age of affected joints noted radiographically?

Datentyp

integer

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

Presence of osteoporotic fractures

Datentyp

integer

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

HEALTH ASSESSMENT QUESTIONNAIRE OR SURVEY COMPLETED

Datentyp

boolean

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

PATIENT’S SELF ASSESSMENT

Datentyp

integer

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

Childhood Health Assessment Questionnaire (CHAQ) completed?

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

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

Datentyp

integer

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

Yes, mark appropriate box(es)

Datentyp

integer

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

COMPLICATIONS DUE TO TOXICITY FROM CONVENTIONAL TREATMENT

Datentyp

boolean

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

if yes, splease specify:

Datentyp

integer

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

FORMS TO BE FILLED IN

TYPE OF TRANSPLANT
Beschreibung

TYPE OF TRANSPLANT

Datentyp

integer

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Ähnliche Modelle

Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

1 Formulare
Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
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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