Información:
Error:
ID
43219
Descripción
Register für Sichelzellerkrankungen Sichel-Reg, 3. Verlaufsdokumentation Registerzentrale: Dr. Dickerhoff / Dr. Potthoff, Klinik für Kinder-Onkologie, -Hämatologie und Klinische Immunologie, Universitätsklinikum Düsseldorf
Palabras clave
Versiones (3)
- 22/9/14 22/9/14 - Martin Dugas
- 29/7/15 29/7/15 - Martin Dugas
- 20/9/21 20/9/21 -
Subido en
20 de septiembre de 2021
DOI
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Licencia
Creative Commons BY-NC 3.0 Legacy
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Follow-Up Registry for Sickle Cell Diseases
Follow-Up Registry for Sickle Cell Diseases
- StudyEvent: ODM-Test
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Follow-Up Registry for Sickle Cell Diseases
- StudyEvent: ODM-Test
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de datos
Alias
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)
CL Item
Male (M)
CL Item
Female (F)
Registration Date
Item
date
C2985881 (UMLS CUI-1)
Registry ID
Item
text
C1549709 (UMLS CUI-1)
Street
Item
text
ZIP code
Item
text
Town
Item
text
E-Mail
Item
text
Telephone
Item
text
CL Item
(1)
CL Item
(2)
CL Item
(3)
CL Item
(4)
Clinic
Item
text
Contact person
Item
text
Street
Item
text
ZIP code
Item
text
Town
Item
text
E-Mail
Item
text
Telephone
Item
text
Fax
Item
text
Doctor´s office
Item
text
Contact person
Item
text
Street
Item
text
ZIP code
Item
text
Town
Item
text
E-Mail
Item
text
Telephone
Item
text
Fax
Item
text
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)
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)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Hand and foot syndrome secondary to sickle cell anemia
Item
boolean
C0852711 (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)
Sepsis
Item
text
C0243026 (UMLS CUI-1)
Osteomyelitis
Item
text
C0029443 (UMLS CUI-1)
Meningitis
Item
text
C0025289 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Aplastic crisis
Item
Aplastic crisis
boolean
C0302111 (UMLS CUI-1)
Hemoglobin (Minimum)
Item
float
C0019046 (UMLS CUI-1)
C1524031 (UMLS CUI-2)
C1524031 (UMLS CUI-2)
Reticulocytes (Minimum)
Item
float
C0035286 (UMLS CUI-1)
C1524031 (UMLS CUI-2)
C1524031 (UMLS CUI-2)
Transfusion
Item
boolean
C1879316 (UMLS CUI-1)
CL Item
(0)
CL Item
(1)
CL Item
(2)
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)
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
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
no therapy
Item
boolean
further complications
Item
text
Acute thoracic syndrome
Item
boolean
Transfusion (Hb below 7g/dl)
Item
boolean
partial exchange transfusion (Hb above 7g/dl)
Item
boolean
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)
Phlebotomy
Item
text
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
Penicillin prophylaxis
Item
text
Hydroxyurea start date
Item
date
C0020402 (UMLS CUI-1)
C0808070 (UMLS CUI-2)
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)
C0808070 (UMLS CUI-2)
Reason for ACE-inhibitors
Item
text
Other medication
Item
text
C0013227 (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)
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)
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)
CL Item
(1)
CL Item
(2)
CL Item
(3)
CL Item
(4)
CL Item
(1)
CL Item
(2)
CL Item
(3)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
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)
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)
C0020542 (UMLS CUI-2)
Echocardiography abnormal
Item
text
C0476369 (UMLS CUI-1)
Physical examination date
Item
date
C2826643 (UMLS CUI-1)
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)
CL Item
(0)
CL Item
(1)
CL Item
(2)
Visual Acuity
Item
text
C0042812 (UMLS CUI-1)
Specific information needs
Item
text
Comments
Item
text
Physicians
Item
text
C0031831 (UMLS CUI-1)
C0027365 (UMLS CUI-2)
C0027365 (UMLS CUI-2)
Date signed
Item
text
C3262251 (UMLS CUI-1)
Signature
Item
Signature
text
C1519316 (UMLS CUI-1)