Patient
Unique Identification Code (UIC)
text
Hospital Unique Patient Number or Code
text
Initials
text
Date of birth
date
Sex
integer
ABO Group
integer
Rh factor
integer
Disease
Date of diagnosis
date
Primary Disease Diagnosis
integer
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Name of Referring Physician
integer
Address
integer
Fax
integer
integer
INITIAL DIAGNOSIS
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds
integer
Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions
integer
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation
integer
Oral or nasopharyngeal ulceration, usually painless, observed by a physician
integer
Non-erosive arthritis involving two or more peripheral joints, characterized by tenderness, swelling or effusion
integer
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
integer
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
integer
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
integer
a) Hemolytic anemia – with reticulocytosis ~OR~ b) Thrombocytopenia – <100,000/mm 3 platelets in the absence of offending drugs
integer
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
integer
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.
integer
FIRST LINE THERAPIES
Date started
date
(including antibodies, GF, hormones, etc.)
text
(including antibodies, GF, hormones, etc.)
integer
Azathioprin
integer
Corticosteroids
integer
Cyclophosphamide
integer
Cyclosporine
integer
Mycophenolate mofetil
integer
Intravenous immune globulin (IVIG)
integer
Other drugs
integer
Lymphocytopheresis
integer
Plasmapheresis
integer
Other drugs
boolean
DATE OF HSCT
STATUS OF DISEASE AT MOBILISATION
Was lupus nephritis present at anytime prior to mobilisation?
integer
Renal biopsy
integer
date of most recent renal biopsy
date
Grade Histology
integer
Grade Histology
text
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.
integer
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.
integer
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.
integer
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.
integer
New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.
integer
Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.
integer
New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.
integer
Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.
integer
More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).
integer
Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.
integer
Heme-granular or red blood cell casts.
integer
>5 red blood cells/high power field. Exclude stone, infection or other cause.
integer
>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours
integer
>5 white blood cells/high power field. Exclude infection
integer
Ongoing inflammatory lupus rash
integer
Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.
integer
Ongoing oral or nasal ulcerations due to active lupus
integer
Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.
integer
Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.
integer
Low complement
integer
>25% binding by Farr assay or above normal range for testing laboratory.
integer
Fever
integer
<100,000 platelets/mm 3 (x 10 9 /L).
integer
<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.
integer
LABORATORY VALUES
Haemoglobin
float
ESR
integer
Erythrocyte sedimentation rate
integer
platelets
integer
WBC
float
Serumcreatinine
float
Creatinine Clearance
float
Total urinary protein excretion (mg/24 h)
float
CH50 Complement reduced
integer
Complement component reduced
integer
Antibodies studied
integer
anti-dsDNA
integer
anti-cardiolipin IgG
integer
anti-cardiolipin IgM
integer
antinuclear antibody (ANA) test
integer
anti-Sm
integer
anti-SSA (anti-Ro)
integer
anti-SSB (anti-La)
integer
lupus-anticoagulant
integer
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
SF-36 Health Survey
integer
Physical Functioning
float
Role Functioning-Physical
float
Role Functioning-Emotional
float
Social Functioning
float
Bodily Pain
float
Mental Health
float
Vitality
float
General Health
float
HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Health Assessment Questionnaire
integer
health score
float
Worst possible score
float
Best possible score
float
STATUS OF DISEASE AT HSCT
Was lupus nephritis present at anytime prior to HSCT?
integer
Was lupus nephritis present at anytime prior to HSCT?
date
Grade Histology
integer
Renal biopsy done?
text
ADDITIONAL TREATMENT POST-HSCT
FORMS TO BE FILLED IN