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Table 1 Patient data collected in the PSC-SDMS database

From: The PSC scientific community resource: an asset for multi-omics interrogation of primary sclerosing cholangitis

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)

  1. BMI, body mass index; ERCP, endoscopic retrograde cholangio-pancreatography; FISH, fluorescent in situ hybridization; MRE, magnetic resonance elastography; IBD, inflammatory bowel disease; UC, ulcerative colitis; CD, Crohn’s disease; UDCA, ursodeoxycholic acid; EMR, electronic medical record