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)
Name at Birth
Item
Geburtsname (bei Änderung des Nachnamens)
text
C1549652 (UMLS CUI-1-1)
Birth date
Item
Patient date of birth
date
C0421451 (UMLS CUI-1-1)
Item
Gender
text
C0079399 (UMLS CUI-1-1)
Registration Date
Item
date
C2985881 (UMLS CUI-1)
Registry ID
Item
text
C1549709 (UMLS CUI-1)
Item
integer
C0024819 (UMLS CUI-1)
Item Group
Family history
C1522326 (UMLS CUI-1)
C0442592 (UMLS CUI-2)
Item Group
Professional career
C0017319 (UMLS CUI-1)
Doctor´s office
Item
text
Item Group
Comments
C0814772 (UMLS CUI-1)
School type
Item
text
C1547791 (UMLS CUI-1)
School Graduation
Item
text
C0237640 (UMLS CUI-1)
Educational Status
Item
text
C0013658 (UMLS CUI-1)
Current occupation
Item
text
C3639274 (UMLS CUI-1)
Item Group
Follow-up status
C0589120 (UMLS CUI-1)
Dead
Item
boolean
C0011065 (UMLS CUI-1)
Date of death
Item
date
C1148348 (UMLS CUI-1)
Cause of death
Item
text
C0007465 (UMLS CUI-1)
Item Group
Pain crisis (last 12 months)
C0231225 (UMLS CUI-1)
Item
integer
C0231225 (UMLS CUI-1)
Hand and foot syndrome secondary to sickle cell anemia
Item
boolean
C0852711 (UMLS CUI-1)
Item Group
clinical examination
C0748932 (UMLS CUI-1)
Spleen sequestration
Item
text
C0748932 (UMLS CUI-1)
Transfusion
Item
boolean
C1879316 (UMLS CUI-1)
Splenectomy
Item
date
C0037995 (UMLS CUI-1)
Item Group
Lab
C0004623 (UMLS CUI-1)
C0750484 (UMLS CUI-2)
Sepsis
Item
text
C0243026 (UMLS CUI-1)
Osteomyelitis
Item
text
C0029443 (UMLS CUI-1)
Meningitis
Item
text
C0025289 (UMLS CUI-1)
Item Group
Cholelithiasis
C0008350 (UMLS CUI-1)
Item
integer
C0008350 (UMLS CUI-1)
Item Group
Cardiological test status
C0302111 (UMLS CUI-1)
Aplastic crisis
Item
Aplastic crisis
boolean
C0302111 (UMLS CUI-1)
Hemoglobin (Minimum)
Item
float
C0019046 (UMLS CUI-1)
C1524031 (UMLS CUI-2)
Reticulocytes (Minimum)
Item
float
C0035286 (UMLS CUI-1)
C1524031 (UMLS CUI-2)
Transfusion
Item
boolean
C1879316 (UMLS CUI-1)
Item
integer
C0086776 (UMLS CUI-1)
Item Group
Eye examination
C0007785 (UMLS CUI-1)
Cerebral infarction
Item
boolean
C0007785 (UMLS CUI-1)
Diagnosis procedure
Item
text
Exchange Transfusion, Whole Blood
Item
text
C0015236 (UMLS CUI-1)
Transfusion therapy chronic
Item
text
C0749634 (UMLS CUI-1)
Hemiparesis
Item
boolean
C0018989 (UMLS CUI-1)
Aphasia
Item
boolean
C0003537 (UMLS CUI-1)
other neurological disorders
Item
text
C2015799 (UMLS CUI-1)
Item Group
Comments
C0005940 (UMLS CUI-1)
Bone Diseases
Item
boolean
C0005940 (UMLS CUI-1)
Bone cover plate fractures
Item
boolean
Aseptic Necrosis of Bone
Item
text
C0520474 (UMLS CUI-1)
Therapy aseptic necrosis of bone
Item
text
other bone-related problems
Item
text
Lower leg ulcera
Item
boolean
Item Group
Urological complications
Urological complications
Item
boolean
Painless hematuria
Item
boolean
C0473235 (UMLS CUI-1)
Enuresis
Item
boolean
C0014394 (UMLS CUI-1)
Priapism
Item
date
C0033117 (UMLS CUI-1)
Effortil p.os.
Item
boolean
Effortil Methylenblau i.cav.
Item
boolean
further complications
Item
text
Item Group
Acute thoracic syndrome
Acute thoracic syndrome
Item
boolean
Transfusion (Hb below 7g/dl)
Item
boolean
partial exchange transfusion (Hb above 7g/dl)
Item
boolean
Item Group
Transfusions
C1879316 (UMLS CUI-1)
Date of Transfusion
Item
date
Reason for transfusion
Item
text
Transfusion therapy chronic
Item
boolean
C0749634 (UMLS CUI-1)
Start of chronic transfusion therapy
Item
date
Reason for chronic transfusions
Item
text
Chelation Therapy
Item
text
C0007975 (UMLS CUI-1)
Surgical procedures
Item
text
bone marrow or stem cell transplantation
Item
text
Special events
Item
text
C0080170 (UMLS CUI-1)
Inpatient days within last 12 months
Item
integer
Item Group
Medication
C0013227 (UMLS CUI-1)
Penicillin prophylaxis
Item
text
Hydroxyurea start date
Item
date
C0020402 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
Hydroxycarbamid dosage
Item
float
Reason for hydroxycarbamide
Item
text
Success hydroxycarbamide
Item
boolean
Side effects hydroxycarbamide
Item
text
ACE inhibitor start date
Item
date
C0003015 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
Reason for ACE-inhibitors
Item
text
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
Body weight
float
C0005910 (UMLS CUI-1-1)
Body weight percentile
Item
integer
C0552346 (UMLS CUI-1)
Height
Item
Height
float
C0005890 (UMLS CUI-1-1)
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 values
C2346633 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
Hemoglobin
Item
float
C0019046 (UMLS CUI-1)
MCV
Item
float
C0524587 (UMLS CUI-1)
Reticulocytes
Item
float
C0035286 (UMLS CUI-1)
Ferritin
Item
float
C0015879 (UMLS CUI-1)
Erythrocytes
Item
float
C0014792 (UMLS CUI-1)
Leukocytes
Item
float
C0023516 (UMLS CUI-1)
Blood platelets
Item
float
C0005821 (UMLS CUI-1)
Granulocytes
Item
float
C0018183 (UMLS CUI-1)
Lymphocyte
Item
float
C0024264 (UMLS CUI-1)
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)
Protein urine 24 hour
Item
float
C1254855 (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)
Item
integer
C0037993 (UMLS CUI-1)
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 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)
Code List
Echocardiography
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)
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
Item
text
C0042812 (UMLS CUI-1)
Item Group
Information needs and comments
Specific information needs
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)