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IPNA Global Registry for Pediatric Renal Replacement Therapy

IPNA Global Registry for Pediatric Renal Replacement Therapy. IPNA Registry. Global Renal Replacement Registry for Children Aims : To provide information on RRT and outcomes in the context of socioeconomic conditions To provide global pediatric RRT benchmarking

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IPNA Global Registry for Pediatric Renal Replacement Therapy

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  1. IPNA Global Registry for Pediatric Renal Replacement Therapy

  2. IPNA Registry Global RenalReplacementRegistryforChildren Aims: • Toprovide information on RRT andoutcomesin the context of socioeconomicconditions • To provide global pediatric RRT benchmarking • To promote pediatric RRT programs in emerging countries • Toempowerclinical research byproviding disease, CKD and RRT demographics

  3. Registry Committee

  4. Achievements 2017 • Publication “Renal Replacement Therapy for Children throughout the world: “The need for a global registry” – Pediatric Nephrology 2018 • First annual report published online • New online data collection platform • Preliminary responses for Annual Report 2018

  5. Annual Report 2017

  6. Annual Report 2017

  7. Annual Report 2017

  8. Annual Report 2017 • Contains for each country: • Number of patients and coverage • Distribution of Primary Renal Diseases • Prevalence of pediatric Renal Replacement Therapy • All modalities combined • Hemodialysis • Peritoneal Dialysis • Transplantation

  9. Prevalence of Renal Replacement Therapy (pmarp)

  10. Prevalence of Transplantation (pmarp)

  11. Online Platform: ipna-registry.org

  12. User hierarchy

  13. 3 Types of Users: • Global Administrator • IPNA Registry Office • Country Representatives • Have access to all patient data of their country • Can add patients and events, but also authorized to add centers + users • Sign the data sharing agreement • Are the main contact persons for the IPNA Registry office • Center specific Users • Only see patients of their own center • Can add patients and events • Stay in contact with their country representative

  14. Website demonstration

  15. Online Data Entry Module

  16. Annual Report 2018 Preliminary responses (invites sent last week) So far all responding countries want tousethewebsite: • Interested to switch from batch to online entry:Armenia, China, Syria, Emirates • Interested to start national registry using IPNA online platform: Uganda, Haiti, Iran, Oman, Bolivia, Chile, Mexico, Peru

  17. Contact us

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