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Table 1 Data being collected

From: Cohort profile: cholangiocarcinoma screening and care program (CASCAP)

CCA -01: Demographic information form: Enrollment

1. Place of resident

2. Date of birth

3. Gender

4. Education

5. Occupation

6. Number of stool examination for liver fluke infection in the past

7. Being ever had found to be infected by liver fluke

8. Number of occasions being treated for liver fluke infection

9. Relatives diagnosed with cholangiocarcinoma

10. Cigarette smoking

11. Alcohol drinking

12. Being ever had chronic alcoholic toxicity

13. Being ever had eaten uncooked or fermented fish (specifically, fresh water with scales)

14. Underlying diseases

CCA-02: Ultrasound form

15. Liver

15.1) Parenchymal ECHO (Normal, Abnormal)

15.2) Fatty liver (Mild, Moderate, Severe)

15.3) Periductal fibrosis (PDF1, PDF2, PDF3)

15.4) Cirrhosis

15.5) Liver Mass (No, Single Mass, Multiple Masses)

15.6) Liver mass characteristics (High echo, Low echo, Mixed echo, Liver cyst)

15.7) Liver mass size

15.8) Liver mass side (left, right)

15.9) Dilated Bile Duct (No dilated duct, Right lobe, Left lobe, Common bile duct)

16. Gallbladder

16.1) Gallbladder findings (Normal, Abnormal)

16.2) Gallbladder wall thickening (Focal, Diffuse) and size

16.3) Gallbladder polyp (Single, Multiple) and size

16.4) Gallbladder mass (Single, Multiple) and size

16.5) Gallstone (None, Single, Multiple)

16.6) Being post cholecystectomy

17. Kidney

17.1) Kidney (Normal, Abnormal)

17.2) Renal cyst (None, Right, Left)

17.3) Parenchymal change (None, Right, Left)

17.4) Renal stone (None, without hydronephrosis, with hydronephrosis)

17.5) Renal stone (None, Right, Left)

17.6) Being post nephrectomy

18. Other Finding (Ascites, Splenomegaly, Others)

CCA-02.1: Confirmatory diagnosis form

19. Mode of confirmatory Diagnosis (CT, MRI, Others)

20. Finding and location of tumor in the bile duct (Normal, Intrahepatic, Perihilar, Distal, Other diseases)

21. Side of intrahepatic CCA, if any (Right lobe, Left lobe)

22. Type of perihilar CCA (BC 1, BC 2, BC 3a, BC 3b, BC 4)

23. Tumor morphology

23.1) Mass forming (nodular) and size

23.2) Periductal infiltrating type

23.3) Intraductal type and size

23.4) Mixed type

24. Hepatic artery (Normal, Encasement)

25. Hepatic vein (Normal, Encasement)

26. Portal vein (Normal, Encasement)

27. Lymph node (Normal, Positive node along hepatoduodenal ligament, Positive at others nodes)

28. Adjacent organ involvement / Distant metastases (No, Yes)

29. Type of organ involvement, if any (Lymph node, Lungs and pleura, Bone, Brain, Peritoneum, Others)

CCA-03: Diagnosis and treatment at the 1st visit

30. Surgical Treatment (Done, Not done)

31. Tumor site (Intrahepatic CCA, Perihilar CCA, Distal CCA, Other diseases)

32. Clinical Staging (TNM)

33. Treatment protocol being implemented

33.1) Surgery (Liver resection, Hilar resection, Bypass, Exploratory laparotomy +/− biopsy, Whipple’s operation)

33.1) Chemotherapy (Adjuvant, Palliative)

33.1) PTBD (Pre-op therapy, Palliative)

33.1) Endoscopic Stent (Pre-op therapy, Palliative)

33.1) Medication Treatment (IV, Antibiotics, Others)

34. Best supportive Treatment (Yes, No)

35. Results (Death, Discharged, Referred to other hospitals)

CCA-03.1: Follow-up treatment form

36. Treatment protocol being implemented

36.1) Surgery (Liver resection, Hilar resection, Bypass, Exploratory laparotomy +/− biopsy, Whipple’s operation)

36.1) Chemotherapy (Adjuvant, Palliative)

36.1) PTBD (Pre-op therapy, Palliative)

36.1) Endoscopic Stent (Pre-op therapy, Palliative)

36.1) Medication Treatment (IV, Antibiotics, Others)

37. Best supportive Treatment (Yes, No)

38. Results (Death, Discharged, Referred to other hospitals)

CCA-04: Final staging diagnosis

39. Tumor site (Intrahepatic bile duct (CCA, C221), Perihilar (CCA, C240), Distal (CCA, C241), Others, non-specified)

40. Marginal status (R0-free margin, R1-not free margin, microscopic, R2-not free margin, gross finding)

41. Lymph node status (N0-no metastasis, N1-metastasis hepatoduodenal node, node 8 or 12, N2-metastasis aortocarval, node 9, 13, 16)

42. Histology (Non papillary, Papillary non invasive, Papillary invasive, Other type)

43. CCA Staging (Stage 0, I, II, IIIA,IIIB, IVA, IVB, Unknown)

44. Metastasis (No data, None, Lymph node, Lungs and pleura, Bone, Brain, Peritoneum, Liver, Others)

CCA-05: Post operation follow-up form

45. Date and mode of follow-up (By hospital visit, By phone call)

46. Status of the patient (Health, Recurrent, Progress, Withdrawn consent, Loss to follow-up >3 months after the appointment, Dead and Cause of dead)

47. Being treated at other hospitals prior to this visit (Yes, No)

48. Co-morbidity (None, Diabetes, Hypertension, Heart disease, Others)

49. Complications (None, Cholangitis, Liver failure, Pancreatitis,

50. Renal failure, Pleural effusion, Intra abdominal bleeding, Wound infection, Ascites, Prolonged bile leakage, Others