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中華民國風濕病醫學會 疾病登錄系統 項目選擇 Scopes Rheumatoid arthritis Ankylosing spondyloarthritis Psoriatic arthritis Other predefined diseases 2 Included items Required Optional 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 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 By major events 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 13 Deleted PE By system or selective items 14 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 15 Y Deleted X-rays CXR - record by yearly Hand - record by yearly Spine, etc. BMD Reporting method image (?) report – free typing or structured report 16 Other items Pharmacoeconomics Genetics 17 Patient questionnaire DAS 28 ACR coreset SF 36 HAQ BASDAI BASFI ACR 66/68 PASI Outputs 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 19