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Transcript
中華民國風濕病醫學會
疾病登錄系統
項目選擇
Scopes
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Rheumatoid arthritis
Ankylosing spondyloarthritis
Psoriatic arthritis
Other predefined diseases
2
Included items
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Required
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Optional
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Patient information
AEs
Treatments
Essential items of x-ray and Labs
Labs
Patient reported questionnaire
X-rays
Can create new items
Defined by study group
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Genetic study
Pharmacoeconomics
3
Patient information
Item
Required
Name
Y (全名)
Birthday
Y
ID
Y
Sex
Y
Race
Y
Residence
鄉鎮市
Optional
Deleted
(原住民、漢人、
客家人)
Telephone
Y
Email
Y
Economic status
Y
Occupational status
Y
BW, BH, BP
Y
4
Disease related characteristics
Item
Required
Optional
Diagnosis date (year, month) Y
Disease onset
Y
Initial symptoms - fatigue
Y
Initial symptoms – pain
Y
Initial symptoms – stiffness
Y
5
Deleted
AE – twice (start and end) for an event
and between (if necessary)
Item
Required Optional
Date (year, month, date)
Y
Categories (system,
disease)
Y
Severity (definition- mild,
moderate, severe)
Y
Outcome
Y
Comments
Y
6
Deleted
AE categories
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By major events
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Cancer
Cardiovascular
Infection (site, diagnosis method
(culture), ICD code, virus, bacteria etc.)
Surgical intervention
Hospitalization
Mortality
TB
Hepatitis – baseline (HBV, HCV)
Pregnancy – outcome
7
Past history
Item
Required
DM
Y
Hypertension
Y
Operation
Y
Hepatitis b (yes or no)
Y
Hepatitis c (yes or no)
Y
TB (yes or no)
Y
Malignancy
Y
Marriage / Children (no. of children) Y
Habit
Y
Smoking (yes or no)
Y
Alcohol drinking / Betel nut
Y
8
Optional Delete
d
Drug categories
Item
Required
DMARD
Y
NSAID
Y
Steroid
Y
Biologics
Y
Other chronic medications
(DM, Anti-hypertension…etc)
Reasons for shift to another
biological
Optional
Y
Y
9
Deleted
Treatment – record by quarterly
Item
Required Optional
Start and stop date
Y
Drug name (or by
categories)
Y
Dose
Y
Duration
Y
10
Deleted
Indices
Item
Required Optional
DAS28
Y
ACR core
Deleted
Y
HAQ
Y
SF-36
Y
Fatigue questionaire
Y
MMSE
Y
11
TB screening
Item
Required Optional
CXR (report or image)
Y
Quantiferon
Y
PPD skin (size)
Y
12
Deleted
PE – record by quarterly
Item
Required Optional
Deformity (yes or no)
Y
Rheumatoid nodule(yes or
no)
Y
Scleritis (yes or no)
Y
SICCA
Y
RA non-related
Y
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Deleted
PE
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By system or selective items
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Laboratory – record by quarterly
Item
Required Optional
ESR
CRP
Y
Y
CBC
Y
Liver function
Y
Renal function
Y
RF
Y
AntiCCP
Y
TNF
Y
HLA typing
Y
Urine routine
Y
ANA
Y
Hepatitis marker
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Y
Deleted
X-rays
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CXR - record by yearly
Hand - record by yearly
Spine, etc.
BMD
Reporting method
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image (?)
report – free typing or structured report
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Other items
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Pharmacoeconomics
Genetics
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Patient questionnaire
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DAS 28
ACR coreset
SF 36
HAQ
BASDAI
BASFI
ACR 66/68
PASI
Outputs
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Patient list, brief report
Treatment
Labs
Patient reports
Adverse events
Pharmacoeconomics
Other pre-defined pages
Cross-tabulation and figures
Export as excel or access format
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