ID
16853
Beschrijving
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
Trefwoorden
Versies (3)
- 21-07-16 21-07-16 -
- 10-08-16 10-08-16 -
- 17-09-21 17-09-21 -
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10 augustus 2016
DOI
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Licentie
Creative Commons BY-NC 3.0
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Systemic lupus erythematosus EBMT General Information Form
Systemic lupus erythematosus EBMT General Information Form
- StudyEvent: ODM
Beschrijving
Patient
Beschrijving
Unique Identification Code (UIC)
Datatype
text
Alias
- UMLS CUI [1]
- C2348585
Beschrijving
Hospital Unique Patient Number or Code
Datatype
text
Alias
- UMLS CUI [1]
- C1827636
Beschrijving
Initials
Datatype
text
Alias
- UMLS CUI [1]
- C2986440
Beschrijving
Date of birth
Datatype
date
Alias
- UMLS CUI [1]
- C0421451
Beschrijving
Sex
Datatype
integer
Alias
- UMLS CUI [1]
- C0079399
Beschrijving
ABO Group
Datatype
integer
Alias
- UMLS CUI [1]
- C0000778
Beschrijving
Rh factor
Datatype
integer
Alias
- UMLS CUI [1]
- C0035403
Beschrijving
Disease
Beschrijving
Date of diagnosis
Datatype
date
Alias
- UMLS CUI [1]
- C2316983
Beschrijving
Primary Disease Diagnosis
Datatype
integer
Alias
- UMLS CUI [1]
- C0277554
Beschrijving
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Beschrijving
Name of Referring Physician
Datatype
integer
Alias
- UMLS CUI [1]
- C1709880
Beschrijving
Address
Datatype
integer
Alias
- UMLS CUI [1]
- C0421449
Beschrijving
Fax
Datatype
integer
Alias
- UMLS CUI [1]
- C1549619
Beschrijving
Datatype
integer
Alias
- UMLS CUI [1]
- C0013849
Beschrijving
INITIAL DIAGNOSIS
Beschrijving
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Beschrijving
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds
Datatype
integer
Alias
- UMLS CUI [1]
- C3805720
Beschrijving
Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions
Datatype
integer
Alias
- UMLS CUI [1]
- C3805721
Beschrijving
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation
Datatype
integer
Alias
- UMLS CUI [1]
- C0349506
Beschrijving
Oral or nasopharyngeal ulceration, usually painless, observed by a physician
Datatype
integer
Alias
- UMLS CUI [1]
- C0149745
Beschrijving
Non-erosive arthritis involving two or more peripheral joints, characterized by tenderness, swelling or effusion
Datatype
integer
Alias
- UMLS CUI [1]
- C0003864
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0036749
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0022658
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0027765
Beschrijving
a) Hemolytic anemia – with reticulocytosis ~OR~ b) Thrombocytopenia – <100,000/mm 3 platelets in the absence of offending drugs
Datatype
integer
Alias
- UMLS CUI [1]
- C0018939
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1]
- C0021053
Beschrijving
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.
Datatype
integer
Alias
- UMLS CUI [1]
- C0003243
Beschrijving
FIRST LINE THERAPIES
Beschrijving
Date started
Datatype
date
Alias
- UMLS CUI [1]
- C3173309
Beschrijving
(including antibodies, GF, hormones, etc.)
Datatype
text
Alias
- UMLS CUI [1]
- C0002844
Beschrijving
(including antibodies, GF, hormones, etc.)
Datatype
integer
Alias
- UMLS CUI [1]
- C0003374
Beschrijving
Azathioprin
Datatype
integer
Alias
- UMLS CUI [1]
- C0004482
Beschrijving
Corticosteroids
Datatype
integer
Alias
- UMLS CUI [1]
- C0001617
Beschrijving
Cyclophosphamide
Datatype
integer
Alias
- UMLS CUI [1]
- C0010583
Beschrijving
Cyclosporine
Datatype
integer
Alias
- UMLS CUI [1]
- C0010592
Beschrijving
Mycophenolate mofetil
Datatype
integer
Alias
- UMLS CUI [1]
- C0209368
Beschrijving
Intravenous immune globulin (IVIG)
Datatype
integer
Alias
- UMLS CUI [1]
- C0085297
Beschrijving
Other drugs
Datatype
integer
Alias
- UMLS CUI [1]
- C2729346
Beschrijving
Lymphocytopheresis
Datatype
integer
Alias
- UMLS CUI [1]
- C0024226
Beschrijving
Plasmapheresis
Datatype
integer
Alias
- UMLS CUI [1]
- C0032134
Beschrijving
Other drugs
Datatype
boolean
Alias
- UMLS CUI [1]
- C2729346
Beschrijving
DATE OF HSCT
Beschrijving
STATUS OF DISEASE AT MOBILISATION
Beschrijving
Was lupus nephritis present at anytime prior to mobilisation?
Datatype
integer
Alias
- UMLS CUI [1]
- C0024143
Beschrijving
Renal biopsy
Datatype
integer
Alias
- UMLS CUI [1]
- C0194073
Beschrijving
date of most recent renal biopsy
Datatype
date
Alias
- UMLS CUI [1,1]
- C0194073
- UMLS CUI [1,2]
- C2963433
Beschrijving
Grade Histology
Datatype
integer
Alias
- UMLS CUI [1]
- C1317415
Beschrijving
Grade Histology
Datatype
text
Alias
- UMLS CUI [1,1]
- C1317415
- UMLS CUI [1,2]
- C0205394
Beschrijving
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Beschrijving
Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.
Datatype
integer
Alias
- UMLS CUI [1]
- C0036572
Beschrijving
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.
Datatype
integer
Alias
- UMLS CUI [1]
- C0033975
Beschrijving
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.
Datatype
integer
Alias
- UMLS CUI [1]
- C0029221
Beschrijving
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.
Datatype
integer
Alias
- UMLS CUI [1]
- C0547030
Beschrijving
New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.
Datatype
integer
Alias
- UMLS CUI [1]
- C0010266
Beschrijving
Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.
Datatype
integer
Alias
- UMLS CUI [1]
- C3898566
Beschrijving
New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.
Datatype
integer
Alias
- UMLS CUI [1]
- C0038454
Beschrijving
Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.
Datatype
integer
Alias
- UMLS CUI [1]
- C0042384
Beschrijving
More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).
Datatype
integer
Alias
- UMLS CUI [1]
- C0003864
Beschrijving
Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.
Datatype
integer
Alias
- UMLS CUI [1]
- C0027121
Beschrijving
Heme-granular or red blood cell casts.
Datatype
integer
Alias
- UMLS CUI [1]
- C4048266
Beschrijving
>5 red blood cells/high power field. Exclude stone, infection or other cause.
Datatype
integer
Alias
- UMLS CUI [1]
- C0018965
Beschrijving
>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours
Datatype
integer
Alias
- UMLS CUI [1]
- C0033687
Beschrijving
>5 white blood cells/high power field. Exclude infection
Datatype
integer
Alias
- UMLS CUI [1]
- C0034359
Beschrijving
Ongoing inflammatory lupus rash
Datatype
integer
Alias
- UMLS CUI [1]
- C0015230
Beschrijving
Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.
Datatype
integer
Alias
- UMLS CUI [1]
- C0002171
Beschrijving
Ongoing oral or nasal ulcerations due to active lupus
Datatype
integer
Alias
- UMLS CUI [1]
- C0236053
Beschrijving
Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.
Datatype
integer
Alias
- UMLS CUI [1]
- C0032231
Beschrijving
Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.
Datatype
integer
Alias
- UMLS CUI [1]
- C1963211
Beschrijving
Low complement
Datatype
integer
Alias
- UMLS CUI [1]
- C3897137
Beschrijving
>25% binding by Farr assay or above normal range for testing laboratory.
Datatype
integer
Alias
- UMLS CUI [1]
- C1148673
Beschrijving
Fever
Datatype
integer
Alias
- UMLS CUI [1]
- C1556366
Beschrijving
<100,000 platelets/mm 3 (x 10 9 /L).
Datatype
integer
Alias
- UMLS CUI [1]
- C0040034
Beschrijving
<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.
Datatype
integer
Alias
- UMLS CUI [1]
- C0023530
Beschrijving
LABORATORY VALUES
Beschrijving
Haemoglobin
Datatype
float
Maateenheden
- g/dL
Alias
- UMLS CUI [1]
- C0019046
Beschrijving
ESR
Datatype
integer
Maateenheden
- mm/hr
Alias
- UMLS CUI [1]
- C1176468
Beschrijving
Erythrocyte sedimentation rate
Datatype
integer
Alias
- UMLS CUI [1]
- C1176468
Beschrijving
platelets
Datatype
integer
Maateenheden
- x10^9 /l
Alias
- UMLS CUI [1]
- C0005821
Beschrijving
WBC
Datatype
float
Maateenheden
- x10^9/l
Alias
- UMLS CUI [1]
- C0023508
Beschrijving
Serumcreatinine
Datatype
float
Alias
- UMLS CUI [1]
- C0201976
Beschrijving
Creatinine Clearance
Datatype
float
Maateenheden
- mL/min
Alias
- UMLS CUI [1]
- C0373595
Beschrijving
Total urinary protein excretion (mg/24 h)
Datatype
float
Alias
- UMLS CUI [1]
- C3897352
Beschrijving
CH50 Complement reduced
Datatype
integer
Alias
- UMLS CUI [1]
- C0369025
Beschrijving
Complement component reduced
Datatype
integer
Alias
- UMLS CUI [1]
- C0009506
Beschrijving
Antibodies studied
Datatype
integer
Alias
- UMLS CUI [1]
- C0003241
Beschrijving
anti-dsDNA
Datatype
integer
Alias
- UMLS CUI [1]
- C2746079
Beschrijving
anti-cardiolipin IgG
Datatype
integer
Alias
- UMLS CUI [1]
- C0368842
Beschrijving
anti-cardiolipin IgM
Datatype
integer
Alias
- UMLS CUI [1]
- C0368843
Beschrijving
antinuclear antibody (ANA) test
Datatype
integer
Alias
- UMLS CUI [1]
- C0003243
Beschrijving
anti-Sm
Datatype
integer
Alias
- UMLS CUI [1]
- C0241910
Beschrijving
anti-SSA (anti-Ro)
Datatype
integer
Alias
- UMLS CUI [1]
- C0075128
Beschrijving
anti-SSB (anti-La)
Datatype
integer
Alias
- UMLS CUI [1]
- C1168480
Beschrijving
lupus-anticoagulant
Datatype
integer
Alias
- UMLS CUI [1]
- C1142517
Beschrijving
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
Beschrijving
SF-36 Health Survey
Datatype
integer
Alias
- UMLS CUI [1]
- C3640521
Beschrijving
Physical Functioning
Datatype
float
Alias
- UMLS CUI [1]
- C0516981
Beschrijving
Role Functioning-Physical
Datatype
float
Alias
- UMLS CUI [1]
- C0516981
Beschrijving
Role Functioning-Emotional
Datatype
float
Alias
- UMLS CUI [1]
- C0013987
Beschrijving
Social Functioning
Datatype
float
Alias
- UMLS CUI [1]
- C2585826
Beschrijving
Bodily Pain
Datatype
float
Alias
- UMLS CUI [1]
- C3890602
Beschrijving
Mental Health
Datatype
float
Alias
- UMLS CUI [1]
- C0025353
Beschrijving
Vitality
Datatype
float
Alias
- UMLS CUI [1]
- C0424589
Beschrijving
General Health
Datatype
float
Alias
- UMLS CUI [1]
- C0516984
Beschrijving
HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Beschrijving
Health Assessment Questionnaire
Datatype
integer
Alias
- UMLS CUI [1]
- C0451208
Beschrijving
health score
Datatype
float
Alias
- UMLS CUI [1]
- C2960025
Beschrijving
Worst possible score
Datatype
float
Alias
- UMLS CUI [1,1]
- C0449820
- UMLS CUI [1,2]
- C1522166
Beschrijving
Best possible score
Datatype
float
Alias
- UMLS CUI [1,1]
- C0449820
- UMLS CUI [1,2]
- C1299381
Beschrijving
STATUS OF DISEASE AT HSCT
Beschrijving
Was lupus nephritis present at anytime prior to HSCT?
Datatype
integer
Alias
- UMLS CUI [1]
- C0024143
Beschrijving
Was lupus nephritis present at anytime prior to HSCT?
Datatype
date
Alias
- UMLS CUI [1]
- C0194073
Beschrijving
Grade Histology
Datatype
integer
Alias
- UMLS CUI [1]
- C1317415
Beschrijving
Renal biopsy done?
Datatype
text
Alias
- UMLS CUI [1]
- C0194073
Beschrijving
ADDITIONAL TREATMENT POST-HSCT
Beschrijving
FORMS TO BE FILLED IN
Similar models
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])