180 likes | 193 Vues
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
E N D
IPNA Global Registry for Pediatric Renal Replacement Therapy
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
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
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
Prevalence of Transplantation (pmarp)
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
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