Data Dictionary: Pancreatic cancer - DPCA

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This is a summary of the variables available in the database. You can download the complete data dictionary. Click here to learn more.

Patient Demographics and Identification:

• Healthcare Institution (Zorginstelling)
• Unique Patient Number (Uniek Patiëntnummer)
• Social Security Number (Burger Service Nummer)
• Surname (Geslachtsnaam)
• Date of Birth (Geboortedatum)
• Gender (Geslacht)
• Country (Country of Residence) (Land (Woonadres))
• Postal Code (Postcode)
• Date of Death (if applicable) (Datum overlijden (indien van toepassing))

Comorbidities:

• Comorbidities, with options to add a new record or update based on changes or previous registrations (Comorbiditeiten)

Medical Procedures:

• Procedures, where multiple procedures per patient can be registered if applicable (Verrichtingen)

COVID-19 Module:

• A generic COVID-19 module added due to the impact of the coronavirus crisis on the quality of care, allowing for the better interpretation of indicators during this period (Deze generieke COVID-19 module)

Pathology Variables through PALGA:

• Pathology variables automatically structured and included in the registration via the PALGA-pathology module, requiring no additional data (In het kader van de PALGA-koppeling worden pathologie variabelen)

Patient Identification and Treatment Timeline

• Treatment start date
• Reason for registration
• Hospital patient number

Patient Physical and Performance Metrics

• Height in cm
• Preoperative weight in kg
• Weight loss in kg and period in weeks
• ECOG performance status (Eastern Cooperative Oncology Group)

Laboratory Biomarkers

• Bilirubine in µmol/l
• Hemoglobine in mmol/l
• Albumine in g/l
• IgG4 in g/l
• Carcinoembryonic antigen (CEA) in µg/l
• CA19.9 in kU/l (Note: Last CA19.9 before the start of neoadjuvant treatment or surgery)

Imaging and Diagnostic Procedures

• CT, MRI, or MRCP performed
• Date of the last preoperative imaging
• Presence of a tumor in the pancreas or periampullary on CT or MRI
• Cystic features suggestive of malignancy
• Involvement of vessels and other structures on imaging

Histology and Cytology

• Preoperative PA number
• Method and date of obtaining the first positive cytology or histology
• Histological and cytological diagnoses

Multidisciplinary Team Consultations and Decisions

• Date of the last MDT (Multidisciplinary Team) discussion before treatment
• Working diagnosis and eligibility for surgical exploration

Treatment and Surgery Details

• Neo-adjuvant/induction treatment type and start date
• Operative details including ASA score, type of resection, and operative complications
• Postoperative pathology including tumor origin, size, and grade

Postoperative Management and Follow-Up

• Palliative treatments including chemotherapy and radiotherapy
• Date of discharge and any readmissions within 30 days
• Adjuvant therapy details and participation in oncological trials

SARS-CoV-2 Suspected or Confirmed Infection

• Presence of a clinical suspicion or test for SARS-CoV-2 infection prior to and up to 30 days post-admission.
• Date of the first suspicion of SARS-CoV-2 infection.
• Date of the first specific test for SARS-CoV-2 infection.
• Date of the first positive laboratory test for SARS-CoV-2.
• Final status regarding SARS-CoV-2 infection.

Preoperative and Postoperative COVID-19 Testing

• Number of preoperative RT-PCR tests and the date of the first test.
• Date of the first preoperative CT thorax with COVID-19 concern and CORADS 4-5 score.
• Number of postoperative RT-PCR tests and the date of the first test.
• Date of the first postoperative CT thorax with COVID-19 concern and CORADS 4-5 score.
• Definitive preoperative and postoperative COVID-19 status.

Patient Characteristics

• Symptoms indicative of COVID-19 (e.g., cough, fever, dyspnea, loss of smell/taste).
• Patient's smoking status and pack-years.
• Patient's height (in cm) and weight (in kg) at admission.

Surgical and Intensive Care Considerations

• Presence of preoperative COVID-19 related complications (e.g., ARDS, acute renal failure, arrhythmias, thromboembolic events).
• Impact on neoadjuvant treatment and changes in treatment plans or schedules.
• Impact on surgical approach (laparoscopic, robotic, open) due to COVID-19.
• Postoperative complaints consistent with COVID-19 and the number of days post-surgery they began.

ICU Admission Related to COVID-19

• Presence and type of ICU admission related to COVID-19.
• Type of respiratory support during ICU stay (e.g., prone ventilation, ECMO).
• ICU admission and discharge dates and durations.
• Destination after ICU discharge.

Sample Information

• Date of tissue arrival at laboratory
• Pathology laboratory
• Pathology number (TJJ-CCCCCC)
• Protocol
• Sample number

Diagnostic Details

• Is cytology or histology obtained during the diagnostic process?
• Most likely origin of the tumor
• Histological diagnosis?

Tumor Characteristics

• Largest tumor diameter in cm
• Smallest margin in cm (radicality)
• Tumor differentiation grade
• Neuroendocrine tumor differentiation grade
• pT-stage pancreatic carcinoma according to TNM8
• Papil of Vater carcinoma according to TNM8
• Distal cholangiocarcinoma according to TNM8
• Duodenum carcinoma according to TNM8 small intestine

Lymph Node and Metastasis Information

• Number of lymph nodes found
• Number of tumor-positive lymph nodes found
• Distant metastases?

Response to Treatment

• Pathological response after neoadjuvant therapy with Histological Tumor Regression Grading (HTRG)