Phenotyping parameters

The PVRI GoDeep Registry is a worldwide deep phenotyping pulmonary hypertension (PH) database spanning over all contintents. Our database contains up to 200 parameters per visit. All parameters are annotated with international standard terminology codes (e.g. LOINC, SNOMED-CT). A detailed list of parameters is provided below.

Data protection

Data processing conforms to the current standard of the European data protection regulation (GDPR). Prior to transfer to the PVRI GoDeep registry, all data is anonymized via k-anonymization at the local registries. During this process, local data protection officers are involved.

Database and analysis tools

All data is stored in a relational database which conforms to the OMOP common data model (CDM). For analysis, complex algorithms and statistical calculations can be run either directly on the OMOP CDM or on data extracts supplied by us. Additionally, simple analysis tools are available via web browser to all members.

List of parameters

  • Biometric data
    • Birth decade
    • Sex
    • Ethnic group finding
      • Caucasian
      • Black
      • Asian
      • Other
    • Deceased number of months after diagnosis
    • Survival status
      • alive
      • deceased
    • Cause of death
      • Heart failure
      • Malignant disease
      • Renal failure
      • Pulmonary infect
      • Right heart decompensation
      • Respiratory insufficiency
      • Sepsis/MODS/SIRS/multi organ failure
      • Transplantation
  • Diagnosis
    • Age at diagnosis
    • Diagnosit class (WS2013 Nice, WS2008 Dana Point)
    • Comorbidities
      • Coronary heart disease
      • Arterial hypertension
      • Venous thromboembolism
      • Diabetis mellitus
      • Thyroid disease
      • Obstructive sleep apnoea
      • Atrial fibrillation
  • Follow up
    • Visit in no of months since diagnosis
    • WHO functional class (also NYHA)
    • BMI (calculated)
    • Body surface area (BSI, calculated)
    • Smoking status
      • Active smoker
      • Ex-smoker
      • Never-smoker
      • Packyears
  • Right heart catheterization (follow up)
    • mPAP
    • mSAP
    • dPAP
    • dPAP
    • Heart rate
    • PAWP
    • CVP
    • SVR
    • CI by Fick method
    • CI by indicator dilution
    • Pulmonary artery blood SO2
    • Peripheral saturation
  • Spiroergometry
  • Echocardiography
  • Electrocardiography
  • 6 minute walk test
  • Blood gas analysis (BGA)
  • Imaging
  • Lung function
  • Medication/PH specific drug therapy