PVS NETWORK
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The PVS Network Registry

This is a multi-centre registry that collects clinical information about children with pulmonary vein stenosis. We collect information about the number of pulmonary veins involved, information about the types of interventions, all clinical imaging tests and information about important outcomes.

​We will use this information to understand clinical practices at different institutions and how we can improve care for children with pulmonary vein stenosis.

We will also use this information to understand outcomes in children with different number of veins affected by  pulmonary vein stenosis.

​We hope that through this important collaboration, we will be able to understand factors that increase risk and understand important variables that predict progression.

​Contact pvs.network@sickkids.ca for more information

The PVS Network Registry Quick Facts

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  • Data is entered into a REDCap database , which uses a secure server
  • All the data is analyzed at the Hospital for Sick Children in Toronto, Canada
  • ​C​urrently there are over 18 institutions across North America contributing data
  • Funding is supplied by a generous donations by individuals invested in improving knowledge about pulmonary vein stenosis and grants from the Hospital for Sick Children.​​ 

PVS Network Retrospective Study 

  • To date, we have approximately 700 children enrolled in the retrospective database ( updated 2021)

  • This cohort will provide insights into clinical outcomes  and disease surveillance

  • The retrospective registry will also serve as a contemporary control cohort for the prospective studies

PVS Network Prospective Study 

  • This study is currently open and recruiting patients 

  • patients can enroll in  additional substudies investigating genetic modifiers and biomarkers in PVS​

Genetics Study

Biomarker Study

  • The etiology or cause of PVS is unknown. 
  • Whole genome sequencing ( Trios) to help understand the genetic determinants of PVS.​
  • Identification of de novo variants or common risk variants will provide insights into disease etiology, aid in risk stratification and lead to discovery of novel therapeutic adjuncts.  
 
  • Currently no biomarkers exist for PVS
  • Study will investigate  known pulmonary hypertensive biomarkers and novel biomarkers in PVS patients
  • Identification of biomarkers will help clinicians detect disease progression and potentially provide insights around prognosis

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Copyright © 2015
  • Home
    • About PVS Network
    • Participating institutions
    • Creating Hope
  • Parents
    • About PVS
    • Clinical tests >
      • Echocardiography
      • CT Scan
      • MRI Scan
      • Heart catheterization
      • Lung perfusion scan
    • Treatment options >
      • Surgery
      • Catheter based intervention
      • Medical therapy
      • Lung transplant
      • Palliative care
    • Frequently asked questions
    • Links
  • Clinicians
    • PVS: outcomes and pathophysiology
    • Clinical Care for Children with PVS >
      • Treatment options >
        • Surgical Options
        • Catheter based interventions
        • Medical therapies
        • Transplantation
        • Palliative Care
      • Surveillance imaging
    • Clinical Scenarios: tough decisions
    • Clinical Trials and Research
  • Research
    • PVS Network Registry >
      • PVS Registry Image Guide
      • PVS data collection forms 2017
    • PVS Clinical Research
    • Recently Published
  • Contact Us
    • Ways to Donate
    • Links to Related Sites
    • Newsletters
  • PVS Awareness
    • T- shirt Campaign
    • Knowledge is Hope
    • TEAM PVS!
    • Resolution
    • Superhero
    • Donate Life Month
    • Supermom
    • Sibling
    • PVS Aware
    • Life is a beautiful ride