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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 drug development Healthcare RWE
From PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
Tickers PRO RWD RWE
Tags QOL validated instruments Real/World Data
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 Healthcare RWE international study
From PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
Tickers RWD RWE
Tags drug development Healthcare chronic kidney disease
From PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
Tickers RWD RWE
Tags Patient Registries rare disease patient registries rare disease platform
From PRUnderground
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