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Latest News about Patient Registries

Recent news which mentions Patient Registries

Timothy Syndrome Alliance & Pulse Infoframe collaborate on registry for rare CACNA1C-related disorders
Tickers RWD RWE
Tags Real/World Data Cancer rare disease platform
From PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
Tickers PRO RWD RWE
Tags Real/World Data Pulse Infoframe Pharmaceutical
From PRUnderground
Ensuring No Duplicates: Implementing Pulse Infoframe’s GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease
Tickers RWD RWE
Tags Global Unique Identifier RWE LouLou Foundation
From PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
Tickers RWD RWE
Tags Patient Registries rare kidney disease patient advocacy
From PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
Tickers RWD RWE
Tags Basket Trials patient advocacy drug development
From PRUnderground
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