ID

43291

Description

Registerzentrale: Dr. Dickerhoff / Dr. Potthoff, Klinik für Kinder-Onkologie, -Hämatologie und Klinische Immunologie, Universitätsklinikum Düsseldorf

Keywords

Versions (2)
  1. 9/22/14 9/22/14 - Martin Dugas
  2. 9/20/21 9/20/21 -
Uploaded on

September 20, 2021

DOI

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License

Creative Commons BY-NC 3.0 Legacy
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Registry for Sickle Cell Diseases, 2.initial assessment

German English

Sichel-Reg, 2. Ersterhebung

1 forms  
  1. StudyEvent: ODM-Test
    1. Sichel-Reg, 2. Ersterhebung
Patient data
Description

Patient data

Alias
UMLS CUI-1
C2707520
Last Name
Description

Last Name

Data type

text

Alias
UMLS CUI-1
C1301584
First Name
Description

First Name

Data type

text

Alias
UMLS CUI-1
C1443235
Birth Date
Description

Birth Date

Data type

date

Alias
UMLS CUI-1
C0421451
Registry ID
Description

Registry ID

Data type

text

Alias
UMLS CUI-1
C1549709
Family history
Description

Family history

Alias
UMLS CUI-1
C0241889
Country of origin father
Data type

text

Alias
UMLS CUI-1
C1300001
UMLS CUI-2
C0015671
Country of origin mother
Data type

text

Alias
UMLS CUI-1
C1300001
UMLS CUI-2
C0026591
Father´s year of birth
Data type

integer

Alias
UMLS CUI-1
C2136977
Mother´s year of birth
Data type

integer

Alias
UMLS CUI-1
C2319404
Sickle Hemoglobin (father)
Data type

text

Alias
UMLS CUI-1
C0019043
UMLS CUI-2
C0015671
Sickle Hemoglobin (mother)
Data type

text

Alias
UMLS CUI-1
C0019043
UMLS CUI-2
C0026591
Registry patient (father)
Data type

boolean

Alias
UMLS CUI-1
C0585825
UMLS CUI-2
C0015671
Registry patient (mother)
Data type

boolean

Alias
UMLS CUI-1
C0585825
UMLS CUI-2
C0026591
Sibling´s birth year
Data type

integer

Sibling´s gender
Data type

integer

Sickle Hemoglobin (sibling)
Data type

text

Registry patient (sibling)
Data type

boolean

Birth year (child)
Data type

integer

Gender (child)
Data type

integer

Sickle Hemoglobin (child)
Data type

text

Registry patient (child)
Data type

boolean

Professional career
Description

Professional career

Alias
UMLS CUI-1
C0011900
Date Hb analysis
Description

Date Hb analysis

Data type

date

lab (Hb analysis)
Description

lab (Hb analysis)

Data type

text

HbA
Data type

float

Measurement units
  • %
%
HbF
Data type

float

Measurement units
  • %
%
HbC
Data type

float

Measurement units
  • %
%
HbA2
Data type

float

Measurement units
  • %
%
HbS
Data type

float

Measurement units
  • %
%
HbD
Data type

float

Measurement units
  • %
%
Other Hb
Data type

float

Measurement units
  • %
%
Other Hb
Data type

text

alpha-Thalassemia
Data type

integer

Alias
UMLS CUI-1
C0002312
Date blood count
Data type

date

Hemoglobin
Data type

float

Measurement units
  • mg/dl
Alias
UMLS CUI-1
C0019046
mg/dl
Erythrocytes
Data type

float

Measurement units
  • Tera/l
Alias
UMLS CUI-1
C0014792
Tera/l
MCV
Data type

float

Measurement units
  • fl
Alias
UMLS CUI-1
C0524587
fl
Leukocytes
Data type

float

Measurement units
  • /µl
Alias
UMLS CUI-1
C0023516
/µl
Reticulocytes
Data type

float

Measurement units
  • %
Alias
UMLS CUI-1
C0035286
%
Blood platelets
Data type

float

Measurement units
  • /µl
Alias
UMLS CUI-1
C0005821
/µl
Ferritin
Data type

float

Measurement units
  • ng/ml
Alias
UMLS CUI-1
C0015879
ng/ml
Genetic Counseling
Data type

boolean

Alias
UMLS CUI-1
C0017382
Prenatal Diagnosis
Data type

boolean

Alias
UMLS CUI-1
C0033053
Pre-existing condition
Data type

boolean

Alias
UMLS CUI-1
C0521987
Pre-existing condition
Data type

text

Alias
UMLS CUI-1
C0521987
Special events
Data type

boolean

Alias
UMLS CUI-1
C0080170
Special events
Data type

text

Alias
UMLS CUI-1
C0080170
Comments
Description

Comments

Aplastic crisis
Description

Comments

Data type

date

Alias
UMLS CUI-1
C0302111
Spleen sequestration
Data type

date

Alias
UMLS CUI-1
C0748932
Splenectomy
Data type

date

Alias
UMLS CUI-1
C0037995
Splenectomy reason
Data type

text

Cerebral infarction
Data type

date

Alias
UMLS CUI-1
C0007785
Aseptic Necrosis of Bone
Data type

date

Alias
UMLS CUI-1
C0520474
Acute thoracic syndrome
Data type

date

Pain crisis
Data type

integer

Alias
UMLS CUI-1
C0231225
Hand and foot syndrome secondary to sickle cell anemia
Data type

date

Alias
UMLS CUI-1
C0852711
Priapism
Data type

date

Alias
UMLS CUI-1
C0033117
Vaccinations
Description

Vaccinations

Alias
UMLS CUI-1
C0042196
Hepatitis B vaccination
Data type

date

Alias
UMLS CUI-1
C0019163
UMLS CUI-2
C0042196
Prevnar vaccination
Data type

date

Alias
UMLS CUI-1
C0876134
UMLS CUI-2
C0042196
Pneumovax vaccination
Data type

date

Alias
UMLS CUI-1
C0071315
UMLS CUI-2
C0042196
Hemophilus influenzae vaccination
Data type

date

Alias
UMLS CUI-1
C0019073
UMLS CUI-2
C0042196
Medication
Description

Medication

Alias
UMLS CUI-1
C0013227
Penicillin prophylaxis
Data type

boolean

Reason for penicillin prophylaxis beyond age of 5
Data type

text

Hydroxyurea start date
Data type

date

Alias
UMLS CUI-1
C0020402
UMLS CUI-2
C0808070
ACE inhibitor start date
Data type

date

Alias
UMLS CUI-1
C0003015
UMLS CUI-2
C0808070
Other medication
Data type

text

Alias
UMLS CUI-1
C0013227
clinical examination
Description

clinical examination

Alias
UMLS CUI-1
C1456356
Physical examination date
Data type

date

Alias
UMLS CUI-1
C2826643
Weight
Data type

float

Measurement units
  • kg
Alias
UMLS CUI-1
C0005910
kg
Body weight percentile
Data type

integer

Alias
UMLS CUI-1
C0552346
Height
Data type

float

Measurement units
  • cm
Alias
UMLS CUI-1
C0005890
cm
Height percentile for age
Data type

integer

Alias
UMLS CUI-1
C2030323
Normal puberty
Data type

boolean

Alias
UMLS CUI-1
C0581852
Systolic blood pressure
Data type

integer

Measurement units
  • mmHg
Alias
UMLS CUI-1
C0871470
mmHg
Diastolic blood pressure
Data type

integer

Measurement units
  • mmHg
Alias
UMLS CUI-1
C0428883
mmHg
Lab
Description

Lab

Date of lab values
Data type

date

Bilirubin total
Data type

float

Measurement units
  • mg/dl
Alias
UMLS CUI-1
C0201913
mg/dl
Creatinine
Data type

float

Measurement units
  • mg/dl
Alias
UMLS CUI-1
C0010294
mg/dl
reported positive urine protein test
Data type

boolean

Alias
UMLS CUI-1
C2186573
Transabdominal Ultrasound
Description

Transabdominal Ultrasound

Alias
UMLS CUI-1
C2348813
Physical examination date
Data type

date

Alias
UMLS CUI-1
C2826643
Hepatomegaly
Data type

boolean

Alias
UMLS CUI-1
C0019209
Abnormal findings diagnostic imaging of liver and biliary tract
Data type

boolean

Alias
UMLS CUI-1
C0495790
Liver size
Data type

float

Alias
UMLS CUI-1
C0426688
Gallbladder
Data type

integer

Alias
UMLS CUI-1
C0016976
Spleen
Data type

integer

Alias
UMLS CUI-1
C0037993
Cardiological test status
Description

Cardiological test status

Alias
UMLS CUI-1
C0420792
Physical examination date
Data type

date

Alias
UMLS CUI-1
C2826643
ECG
Data type

integer

Alias
UMLS CUI-1
C1623258
ECG arrhythmia at rest
Data type

boolean

Alias
UMLS CUI-1
C2036200
ECG signs of ventricular hypertrophy
Data type

boolean

Alias
UMLS CUI-1
C0919857
Electrocardiogram abnormal
Data type

text

Alias
UMLS CUI-1
C0522055
Echocardiography
Data type

integer

Alias
UMLS CUI-1
C0013516
Myocardial contractility decreased
Data type

boolean

Alias
UMLS CUI-1
C3671557
Suspected Pulmonary Hypertension
Data type

boolean

Alias
UMLS CUI-1
C0581832
UMLS CUI-2
C0020542
Echocardiography abnormal
Data type

text

Alias
UMLS CUI-1
C0476369
Eye examination
Description

Eye examination

Alias
UMLS CUI-1
C0200149
Physical examination date
Data type

date

Alias
UMLS CUI-1
C2826643
Fundoscopy
Data type

text

Alias
UMLS CUI-1
C0029090
Retinal Detachment
Data type

boolean

Alias
UMLS CUI-1
C0035305
Proliferative retinopathy
Data type

boolean

Alias
UMLS CUI-1
C0339467
Vitreous Hemorrhage
Data type

boolean

Alias
UMLS CUI-1
C0042909
Funduscopic exam abnormal
Data type

text

Alias
UMLS CUI-1
C0744229
Interventional procedure
Data type

text

Alias
UMLS CUI-1
C0184661
Visual Acuity
Data type

integer

Alias
UMLS CUI-1
C0042812
Visual Acuity
Data type

text

Alias
UMLS CUI-1
C0042812
Comments
Description

Comments

Alias
UMLS CUI-1
C0947611
Specific information needs
Data type

text

Comments
Data type

text

Signature
Description

Signature

Alias
UMLS CUI-1
C1519316
Physicians
Description

Name of physician

Data type

text

Alias
UMLS CUI-1
C0031831
UMLS CUI-2
C0027365
Date signed
Description

Date of signature

Data type

text

Alias
UMLS CUI-1
C3262251
Signature
Description

Signature

Data type

text

Alias
UMLS CUI-1
C1519316
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Similar models

Sichel-Reg, 2. Ersterhebung

1 forms
  1. StudyEvent: ODM-Test
    1. Sichel-Reg, 2. Ersterhebung
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Patient data
C2707520 (UMLS CUI-1)
Last Name
Item
Last Name
text
C1301584 (UMLS CUI-1)
First Name
Item
First Name
text
C1443235 (UMLS CUI-1)
Birth Date
Item
Birth Date
date
C0421451 (UMLS CUI-1)
Registry ID
Item
text
C1549709 (UMLS CUI-1)
Item Group
Family history
C0241889 (UMLS CUI-1)
Country of origin father
Item
text
C1300001 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
Country of origin mother
Item
text
C1300001 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
Father´s year of birth
Item
integer
C2136977 (UMLS CUI-1)
Mother´s year of birth
Item
integer
C2319404 (UMLS CUI-1)
Sickle Hemoglobin (father)
Item
text
C0019043 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
Sickle Hemoglobin (mother)
Item
text
C0019043 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
Registry patient (father)
Item
boolean
C0585825 (UMLS CUI-1)
C0015671 (UMLS CUI-2)
Registry patient (mother)
Item
boolean
C0585825 (UMLS CUI-1)
C0026591 (UMLS CUI-2)
Sibling´s birth year
Item
integer
Item
integer
Sibling´s gender
Code List
Sibling´s gender
CL Item
 (1)
CL Item
 (2)
Sickle Hemoglobin (sibling)
Item
text
Registry patient (sibling)
Item
boolean
Birth year (child)
Item
integer
Item
integer
Gender (child)
Code List
Gender (child)
CL Item
 (1)
CL Item
 (2)
Sickle Hemoglobin (child)
Item
text
Registry patient (child)
Item
boolean
Item Group
Professional career
C0011900 (UMLS CUI-1)
Date Hb analysis
Item
Date Hb analysis
date
lab (Hb analysis)
Item
lab (Hb analysis)
text
HbA
Item
float
HbF
Item
float
HbC
Item
float
HbA2
Item
float
HbS
Item
float
HbD
Item
float
Other Hb
Item
float
Other Hb
Item
text
Item
integer
C0002312 (UMLS CUI-1)
alpha-Thalassemia
Code List
alpha-Thalassemia
CL Item
 (1)
CL Item
 (2)
CL Item
 (3)
Date blood count
Item
date
Hemoglobin
Item
float
C0019046 (UMLS CUI-1)
Erythrocytes
Item
float
C0014792 (UMLS CUI-1)
MCV
Item
float
C0524587 (UMLS CUI-1)
Leukocytes
Item
float
C0023516 (UMLS CUI-1)
Reticulocytes
Item
float
C0035286 (UMLS CUI-1)
Blood platelets
Item
float
C0005821 (UMLS CUI-1)
Ferritin
Item
float
C0015879 (UMLS CUI-1)
Genetic Counseling
Item
boolean
C0017382 (UMLS CUI-1)
Prenatal Diagnosis
Item
boolean
C0033053 (UMLS CUI-1)
Pre-existing condition
Item
boolean
C0521987 (UMLS CUI-1)
Pre-existing condition
Item
text
C0521987 (UMLS CUI-1)
Special events
Item
boolean
C0080170 (UMLS CUI-1)
Special events
Item
text
C0080170 (UMLS CUI-1)
Item Group
Comments
Aplastic crisis
Item
date
C0302111 (UMLS CUI-1)
Spleen sequestration
Item
date
C0748932 (UMLS CUI-1)
Splenectomy
Item
date
C0037995 (UMLS CUI-1)
Splenectomy reason
Item
text
Cerebral infarction
Item
date
C0007785 (UMLS CUI-1)
Aseptic Necrosis of Bone
Item
date
C0520474 (UMLS CUI-1)
Acute thoracic syndrome
Item
date
Item
integer
C0231225 (UMLS CUI-1)
Pain crisis
Code List
Pain crisis
CL Item
 (0)
CL Item
 (1)
CL Item
 (2)
Hand and foot syndrome secondary to sickle cell anemia
Item
date
C0852711 (UMLS CUI-1)
Priapism
Item
date
C0033117 (UMLS CUI-1)
Item Group
Vaccinations
C0042196 (UMLS CUI-1)
Hepatitis B vaccination
Item
date
C0019163 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
Prevnar vaccination
Item
date
C0876134 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
Pneumovax vaccination
Item
date
C0071315 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
Hemophilus influenzae vaccination
Item
date
C0019073 (UMLS CUI-1)
C0042196 (UMLS CUI-2)
Item Group
Medication
C0013227 (UMLS CUI-1)
Penicillin prophylaxis
Item
boolean
Reason for penicillin prophylaxis beyond age of 5
Item
text
Hydroxyurea start date
Item
date
C0020402 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
ACE inhibitor start date
Item
date
C0003015 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
Other medication
Item
text
C0013227 (UMLS CUI-1)
Item Group
clinical examination
C1456356 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Weight
Item
float
C0005910 (UMLS CUI-1)
Body weight percentile
Item
integer
C0552346 (UMLS CUI-1)
Height
Item
float
C0005890 (UMLS CUI-1)
Height percentile for age
Item
integer
C2030323 (UMLS CUI-1)
Normal puberty
Item
boolean
C0581852 (UMLS CUI-1)
Systolic blood pressure
Item
integer
C0871470 (UMLS CUI-1)
Diastolic blood pressure
Item
integer
C0428883 (UMLS CUI-1)
Item Group
Lab
Date of lab values
Item
date
Bilirubin total
Item
float
C0201913 (UMLS CUI-1)
Creatinine
Item
float
C0010294 (UMLS CUI-1)
reported positive urine protein test
Item
boolean
C2186573 (UMLS CUI-1)
Item Group
Transabdominal Ultrasound
C2348813 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Hepatomegaly
Item
boolean
C0019209 (UMLS CUI-1)
Abnormal findings diagnostic imaging of liver and biliary tract
Item
boolean
C0495790 (UMLS CUI-1)
Liver size
Item
float
C0426688 (UMLS CUI-1)
Item
integer
C0016976 (UMLS CUI-1)
Gallbladder
Code List
Gallbladder
CL Item
 (1)
CL Item
 (2)
CL Item
 (3)
CL Item
 (4)
Item
integer
C0037993 (UMLS CUI-1)
Spleen
Code List
Spleen
CL Item
 (1)
CL Item
 (2)
CL Item
 (3)
Item Group
Cardiological test status
C0420792 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Item
integer
C1623258 (UMLS CUI-1)
ECG
Code List
ECG
CL Item
 (0)
CL Item
 (1)
CL Item
 (2)
ECG arrhythmia at rest
Item
boolean
C2036200 (UMLS CUI-1)
ECG signs of ventricular hypertrophy
Item
boolean
C0919857 (UMLS CUI-1)
Electrocardiogram abnormal
Item
text
C0522055 (UMLS CUI-1)
Item
integer
C0013516 (UMLS CUI-1)
Echocardiography
Code List
Echocardiography
CL Item
 (0)
CL Item
 (1)
CL Item
 (2)
Myocardial contractility decreased
Item
boolean
C3671557 (UMLS CUI-1)
Suspected Pulmonary Hypertension
Item
boolean
C0581832 (UMLS CUI-1)
C0020542 (UMLS CUI-2)
Echocardiography abnormal
Item
text
C0476369 (UMLS CUI-1)
Item Group
Eye examination
C0200149 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Item
text
C0029090 (UMLS CUI-1)
Fundoscopy
Code List
Fundoscopy
CL Item
 (0)
CL Item
 (1)
CL Item
 (2)
Retinal Detachment
Item
boolean
C0035305 (UMLS CUI-1)
Proliferative retinopathy
Item
boolean
C0339467 (UMLS CUI-1)
Vitreous Hemorrhage
Item
boolean
C0042909 (UMLS CUI-1)
Funduscopic exam abnormal
Item
text
C0744229 (UMLS CUI-1)
Interventional procedure
Item
text
C0184661 (UMLS CUI-1)
Item
integer
C0042812 (UMLS CUI-1)
Visual Acuity
Code List
Visual Acuity
CL Item
 (0)
CL Item
 (1)
CL Item
 (2)
Visual Acuity
Item
text
C0042812 (UMLS CUI-1)
Item Group
Comments
C0947611 (UMLS CUI-1)
Specific information needs
Item
text
Comments
Item
text
Item Group
Signature
C1519316 (UMLS CUI-1)
Physicians
Item
text
C0031831 (UMLS CUI-1)
C0027365 (UMLS CUI-2)
Date signed
Item
text
C3262251 (UMLS CUI-1)
Signature
Item
Signature
text
C1519316 (UMLS CUI-1)
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