Category | Variables |
---|---|
Patient demographics | Date of birth, Sex, Ethnicity, Race, Weight, Height, BMI |
Chart review | Date of chart review, Date of last clinical encounter, Inclusion/Exclusion, Vital status (date and cause of death, if applicable) |
PSC diagnosis | Date of diagnosis, Type of PSC (small duct, large duct), PSC location (intrahepatic, extrahepatic, both), Symptoms presenting at diagnosis, Overlap with autoimmune hepatitis, Other concurrent liver disease |
Liver Biopsy | Yes/no, Dates, Histological stage (Ludwig’s system) |
ERCP | Yes/no, Dates, FISH polysomy findings, Cytology findings |
MRE | Yes/no, Dates, Liver stiffness findings |
Dominant stricture | Yes/no, Date, Location of stricture |
Disease complications | Cirrhosis (yes/no, date), Ascites (yes/no, date), Splenomegaly (yes/no, date), Varices (yes/no, date), Variceal hemorrhage (yes/no, date), Hepatic encephalopathy (yes/no, date) |
Hepatobiliary cancer | Cholangiocarcinoma (yes/no, date), Hepatocellular carcinoma (yes/no, date), Gallbladder cancer (yes/no, date) |
Liver transplantation | Listed for transplant (yes/no, date), Received transplant (yes/no, dates, indications, donor types) |
IBD assessment | Yes/no, Type of IBD (UC, CD, indeterminate), Colon biopsy (yes/no, dates, findings), Pouchitis (yes/no, date), Proctocolectomy (yes/no, date), Colon dysplasia (yes/no, date), Colorectal cancer (yes/no, date) |
Medications | UDCA (yes/no, dose, dates), Prednisone (yes/no, dates), 5-aminosalicyclic acid (yes/no, dates), Azathioprine (yes/no, dates), Mercaptopurine (yes/no, dates), Biological therapy for IBD (yes/no, dates) |
Concurrent Autoimmunity (pulled from EMR) | Autoimmune thyroid disease (yes/no, date, type), Rheumatoid arthritis (yes/no, date), Type 1 diabetes (yes/no, date), Psoriasis (yes/no, date), Celiac disease (yes/no, date), Raynaud’s syndrome (yes/no, date), Scleroderma (yes/no, date), Sjogren’s syndrome (yes/no, date), Systemic lupus erythematosus (yes/no, date), Vitiligo (yes/no, date), other autoimmunity (specify) |
Laboratory tests (pulled from EMR) | Alkaline phosphatase, aspartate aminotransferase, alanine aminotransferase, bilirubin (total and direct), albumin, sodium, creatinine, platelets, hemoglobin, white blood cells, IgG (total and IgG4), international normalized ratio – (dates, values, normal ranges and value flags for each test) |