ID
16853
Beschreibung
ODM form derived from 119pp EBMT SLE 16SLE please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx
Link
Stichworte
Versionen (3)
- 21.07.16 21.07.16 -
- 10.08.16 10.08.16 -
- 17.09.21 17.09.21 -
Hochgeladen am
10. August 2016
DOI
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Systemic lupus erythematosus EBMT General Information Form
Systemic lupus erythematosus EBMT General Information Form
- StudyEvent: ODM
Beschreibung
Patient
Beschreibung
Unique Identification Code (UIC)
Datentyp
text
Alias
- UMLS CUI [1]
- C2348585
Beschreibung
Hospital Unique Patient Number or Code
Datentyp
text
Alias
- UMLS CUI [1]
- C1827636
Beschreibung
Initials
Datentyp
text
Alias
- UMLS CUI [1]
- C2986440
Beschreibung
Date of birth
Datentyp
date
Alias
- UMLS CUI [1]
- C0421451
Beschreibung
Sex
Datentyp
integer
Alias
- UMLS CUI [1]
- C0079399
Beschreibung
ABO Group
Datentyp
integer
Alias
- UMLS CUI [1]
- C0000778
Beschreibung
Rh factor
Datentyp
integer
Alias
- UMLS CUI [1]
- C0035403
Beschreibung
Disease
Beschreibung
Date of diagnosis
Datentyp
date
Alias
- UMLS CUI [1]
- C2316983
Beschreibung
Primary Disease Diagnosis
Datentyp
integer
Alias
- UMLS CUI [1]
- C0277554
Beschreibung
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Beschreibung
Name of Referring Physician
Datentyp
integer
Alias
- UMLS CUI [1]
- C1709880
Beschreibung
Address
Datentyp
integer
Alias
- UMLS CUI [1]
- C0421449
Beschreibung
Fax
Datentyp
integer
Alias
- UMLS CUI [1]
- C1549619
Beschreibung
Datentyp
integer
Alias
- UMLS CUI [1]
- C0013849
Beschreibung
INITIAL DIAGNOSIS
Beschreibung
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Beschreibung
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds
Datentyp
integer
Alias
- UMLS CUI [1]
- C3805720
Beschreibung
Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions
Datentyp
integer
Alias
- UMLS CUI [1]
- C3805721
Beschreibung
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation
Datentyp
integer
Alias
- UMLS CUI [1]
- C0349506
Beschreibung
Oral or nasopharyngeal ulceration, usually painless, observed by a physician
Datentyp
integer
Alias
- UMLS CUI [1]
- C0149745
Beschreibung
Non-erosive arthritis involving two or more peripheral joints, characterized by tenderness, swelling or effusion
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003864
Beschreibung
a) Pleuritis – convincing history of pleuritic pain or rub heard by a physician or evidence of pleural effusion ~OR~ b) Pericarditis – documented by ECG or rub or evidence of pericardial effusion
Datentyp
integer
Alias
- UMLS CUI [1]
- C0036749
Beschreibung
a) Persistent proteinuria >0.5 grams per day or >3+ on urine dipsCheck if quantitation not performed ~OR~ b) Cellular casts – may be red cell, hemoglobulin, granular, tubular or mixed
Datentyp
integer
Alias
- UMLS CUI [1]
- C0022658
Beschreibung
a) Seizures – in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis or electrolyte imbalance ~OR~ b) Psychosis – in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis or electrolyte imbalance
Datentyp
integer
Alias
- UMLS CUI [1]
- C0027765
Beschreibung
a) Hemolytic anemia – with reticulocytosis ~OR~ b) Thrombocytopenia – <100,000/mm 3 platelets in the absence of offending drugs
Datentyp
integer
Alias
- UMLS CUI [1]
- C0018939
Beschreibung
a) Anti-DNA: antibody to native DNA in abnormal titer ~OR~ b) Anti-Sm: presence of antibody to Sm nuclear antigen ~OR~ c) Positive finding of antiphospholipid antibodies based on (1) an abnormal serum level of IgG or IgM anticardiolipin antibodies, (2) a positive test result for lupus anticoagulant using a standard method, or (3) a false positive serologic test for Syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilisation or fluorescent treponemal antibody absorption test ~OR d) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilisation or fluorescent treponemal antibody absorption test
Datentyp
integer
Alias
- UMLS CUI [1]
- C0021053
Beschreibung
An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with “drug-induced lupus” syndrome.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003243
Beschreibung
FIRST LINE THERAPIES
Beschreibung
Date started
Datentyp
date
Alias
- UMLS CUI [1]
- C3173309
Beschreibung
(including antibodies, GF, hormones, etc.)
Datentyp
text
Alias
- UMLS CUI [1]
- C0002844
Beschreibung
(including antibodies, GF, hormones, etc.)
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003374
Beschreibung
Azathioprin
Datentyp
integer
Alias
- UMLS CUI [1]
- C0004482
Beschreibung
Corticosteroids
Datentyp
integer
Alias
- UMLS CUI [1]
- C0001617
Beschreibung
Cyclophosphamide
Datentyp
integer
Alias
- UMLS CUI [1]
- C0010583
Beschreibung
Cyclosporine
Datentyp
integer
Alias
- UMLS CUI [1]
- C0010592
Beschreibung
Mycophenolate mofetil
Datentyp
integer
Alias
- UMLS CUI [1]
- C0209368
Beschreibung
Intravenous immune globulin (IVIG)
Datentyp
integer
Alias
- UMLS CUI [1]
- C0085297
Beschreibung
Other drugs
Datentyp
integer
Alias
- UMLS CUI [1]
- C2729346
Beschreibung
Lymphocytopheresis
Datentyp
integer
Alias
- UMLS CUI [1]
- C0024226
Beschreibung
Plasmapheresis
Datentyp
integer
Alias
- UMLS CUI [1]
- C0032134
Beschreibung
Other drugs
Datentyp
boolean
Alias
- UMLS CUI [1]
- C2729346
Beschreibung
DATE OF HSCT
Beschreibung
STATUS OF DISEASE AT MOBILISATION
Beschreibung
Was lupus nephritis present at anytime prior to mobilisation?
Datentyp
integer
Alias
- UMLS CUI [1]
- C0024143
Beschreibung
Renal biopsy
Datentyp
integer
Alias
- UMLS CUI [1]
- C0194073
Beschreibung
date of most recent renal biopsy
Datentyp
date
Alias
- UMLS CUI [1,1]
- C0194073
- UMLS CUI [1,2]
- C2963433
Beschreibung
Grade Histology
Datentyp
integer
Alias
- UMLS CUI [1]
- C1317415
Beschreibung
Grade Histology
Datentyp
text
Alias
- UMLS CUI [1,1]
- C1317415
- UMLS CUI [1,2]
- C0205394
Beschreibung
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Beschreibung
Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0036572
Beschreibung
Altered ability to function in normal activity due to severe disturbance in the perception of reality. Include hallucinations, incoherence, marked loose associations, impoverished thought content, marked illogical thinking, bizarre, disorganized or catatonic behavior. Exclude uremia and drug causes.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0033975
Beschreibung
Altered mental function with impaired orientation, memory or other intellectual function, with rapid onset and fluctuating clinical features. Include clouding of consciousness with reduced capacity to focus and inability to sustain attention to environment, plus at least 2 of the following: perceptual disturbance, incoherent speech, insomnia or daytime drowsiness or increased or decreased psychomotor activity. Exclude metabolic, infectious or drug causes.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0029221
Beschreibung
Retinal and eye changes of SLE. Include cytoid bodies, retinal hemorrhages, serous exudate or hemorrhages in the choroid, optic neuritis, scleritis or episcleritis. Exclude hypertension, infection or drug causes.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0547030
Beschreibung
New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0010266
Beschreibung
Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.
Datentyp
integer
Alias
- UMLS CUI [1]
- C3898566
Beschreibung
New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0038454
Beschreibung
Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0042384
Beschreibung
More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003864
Beschreibung
Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0027121
Beschreibung
Heme-granular or red blood cell casts.
Datentyp
integer
Alias
- UMLS CUI [1]
- C4048266
Beschreibung
>5 red blood cells/high power field. Exclude stone, infection or other cause.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0018965
Beschreibung
>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours
Datentyp
integer
Alias
- UMLS CUI [1]
- C0033687
Beschreibung
>5 white blood cells/high power field. Exclude infection
Datentyp
integer
Alias
- UMLS CUI [1]
- C0034359
Beschreibung
Ongoing inflammatory lupus rash
Datentyp
integer
Alias
- UMLS CUI [1]
- C0015230
Beschreibung
Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0002171
Beschreibung
Ongoing oral or nasal ulcerations due to active lupus
Datentyp
integer
Alias
- UMLS CUI [1]
- C0236053
Beschreibung
Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0032231
Beschreibung
Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.
Datentyp
integer
Alias
- UMLS CUI [1]
- C1963211
Beschreibung
Low complement
Datentyp
integer
Alias
- UMLS CUI [1]
- C3897137
Beschreibung
>25% binding by Farr assay or above normal range for testing laboratory.
Datentyp
integer
Alias
- UMLS CUI [1]
- C1148673
Beschreibung
Fever
Datentyp
integer
Alias
- UMLS CUI [1]
- C1556366
Beschreibung
<100,000 platelets/mm 3 (x 10 9 /L).
Datentyp
integer
Alias
- UMLS CUI [1]
- C0040034
Beschreibung
<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.
Datentyp
integer
Alias
- UMLS CUI [1]
- C0023530
Beschreibung
LABORATORY VALUES
Beschreibung
Haemoglobin
Datentyp
float
Maßeinheiten
- g/dL
Alias
- UMLS CUI [1]
- C0019046
Beschreibung
ESR
Datentyp
integer
Maßeinheiten
- mm/hr
Alias
- UMLS CUI [1]
- C1176468
Beschreibung
Erythrocyte sedimentation rate
Datentyp
integer
Alias
- UMLS CUI [1]
- C1176468
Beschreibung
platelets
Datentyp
integer
Maßeinheiten
- x10^9 /l
Alias
- UMLS CUI [1]
- C0005821
Beschreibung
WBC
Datentyp
float
Maßeinheiten
- x10^9/l
Alias
- UMLS CUI [1]
- C0023508
Beschreibung
Serumcreatinine
Datentyp
float
Alias
- UMLS CUI [1]
- C0201976
Beschreibung
Creatinine Clearance
Datentyp
float
Maßeinheiten
- mL/min
Alias
- UMLS CUI [1]
- C0373595
Beschreibung
Total urinary protein excretion (mg/24 h)
Datentyp
float
Alias
- UMLS CUI [1]
- C3897352
Beschreibung
CH50 Complement reduced
Datentyp
integer
Alias
- UMLS CUI [1]
- C0369025
Beschreibung
Complement component reduced
Datentyp
integer
Alias
- UMLS CUI [1]
- C0009506
Beschreibung
Antibodies studied
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003241
Beschreibung
anti-dsDNA
Datentyp
integer
Alias
- UMLS CUI [1]
- C2746079
Beschreibung
anti-cardiolipin IgG
Datentyp
integer
Alias
- UMLS CUI [1]
- C0368842
Beschreibung
anti-cardiolipin IgM
Datentyp
integer
Alias
- UMLS CUI [1]
- C0368843
Beschreibung
antinuclear antibody (ANA) test
Datentyp
integer
Alias
- UMLS CUI [1]
- C0003243
Beschreibung
anti-Sm
Datentyp
integer
Alias
- UMLS CUI [1]
- C0241910
Beschreibung
anti-SSA (anti-Ro)
Datentyp
integer
Alias
- UMLS CUI [1]
- C0075128
Beschreibung
anti-SSB (anti-La)
Datentyp
integer
Alias
- UMLS CUI [1]
- C1168480
Beschreibung
lupus-anticoagulant
Datentyp
integer
Alias
- UMLS CUI [1]
- C1142517
Beschreibung
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
Beschreibung
SF-36 Health Survey
Datentyp
integer
Alias
- UMLS CUI [1]
- C3640521
Beschreibung
Physical Functioning
Datentyp
float
Alias
- UMLS CUI [1]
- C0516981
Beschreibung
Role Functioning-Physical
Datentyp
float
Alias
- UMLS CUI [1]
- C0516981
Beschreibung
Role Functioning-Emotional
Datentyp
float
Alias
- UMLS CUI [1]
- C0013987
Beschreibung
Social Functioning
Datentyp
float
Alias
- UMLS CUI [1]
- C2585826
Beschreibung
Bodily Pain
Datentyp
float
Alias
- UMLS CUI [1]
- C3890602
Beschreibung
Mental Health
Datentyp
float
Alias
- UMLS CUI [1]
- C0025353
Beschreibung
Vitality
Datentyp
float
Alias
- UMLS CUI [1]
- C0424589
Beschreibung
General Health
Datentyp
float
Alias
- UMLS CUI [1]
- C0516984
Beschreibung
HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Beschreibung
Health Assessment Questionnaire
Datentyp
integer
Alias
- UMLS CUI [1]
- C0451208
Beschreibung
health score
Datentyp
float
Alias
- UMLS CUI [1]
- C2960025
Beschreibung
Worst possible score
Datentyp
float
Alias
- UMLS CUI [1,1]
- C0449820
- UMLS CUI [1,2]
- C1522166
Beschreibung
Best possible score
Datentyp
float
Alias
- UMLS CUI [1,1]
- C0449820
- UMLS CUI [1,2]
- C1299381
Beschreibung
STATUS OF DISEASE AT HSCT
Beschreibung
Was lupus nephritis present at anytime prior to HSCT?
Datentyp
integer
Alias
- UMLS CUI [1]
- C0024143
Beschreibung
Was lupus nephritis present at anytime prior to HSCT?
Datentyp
date
Alias
- UMLS CUI [1]
- C0194073
Beschreibung
Grade Histology
Datentyp
integer
Alias
- UMLS CUI [1]
- C1317415
Beschreibung
Renal biopsy done?
Datentyp
text
Alias
- UMLS CUI [1]
- C0194073
Beschreibung
ADDITIONAL TREATMENT POST-HSCT
Beschreibung
FORMS TO BE FILLED IN
Ähnliche Modelle
Systemic lupus erythematosus EBMT General Information Form
- StudyEvent: ODM
C0011008 (UMLS CUI [1,2])
C2963433 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
C1522166 (UMLS CUI [1,2])
C1299381 (UMLS CUI [1,2])
C0040739 (UMLS CUI [1,2])