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Registry
Introduction Registry Registry WG
Sub-registries
Hereditary Haemorrhagic Telangiectasia Registry Heritable Thoracic Aortic Diseases Registry Medium Sized Arteries Registry Neurovascular Diseases Registry Pediatric and Primary Lymphedema Registry Vascular Anomalies Registry

Pediatric and Primary Lymphedema Registry

The PPL registry collects data from patients with rare vascular diseases who are being treated at various expert centres across Europe. Its primary objective is to enhance our understanding of these rare diseases through various research endeavors, such as natural history studies, genotype-phenotype correlations, population comparisons, and cross-country care comparisons.

PPL Registry

  • PPL registry (using IT platform Castor) is technically ready to start registering patients
  • It has been registered at ERDRI.dor and ERDRI.mdr.
  • PPL HCP Nij Smellinghe hospital has signed the contract with Castor and the installation of Castor is now taking place.
  • PPL HCP Helsinki University Hospital almost ready to register patients: has signed permit for using the hospital data and soon to sign contract with Castor
  • Disease specific elements are defined and are at EJP-RD for selecting and modeling
  • The German PPL HCP, Földiklinik, has also signed the contract with Castor.

List of Studies:

To date, no studies have been conducted utilizing the registry data. However, ongoing efforts are being made to leverage the data for future research purposes.

Contact Information:

If you have any questions or inquiries, please follow the instruction below

For Patients:

  • For questions regarding your participation or data, please consult your treating physician.
  • For inquiries regarding data security, kindly email vascern_registry@vascern.eu.

For Researchers or Policymakers:

  • If you are a researcher or policymaker seeking information related to data utilization, please reach out to dac@vascern.eu.

For General Inquiries:

 

Data Elements:

A comprehensive list of all data elements collected within the PPL registry can be found here.

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