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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 rare disease platform Timothy Syndrome Cancer
From PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
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Tags Healthcare QOL Pulse Infoframe
From PRUnderground
Ensuring No Duplicates: Implementing Pulse Infoframe’s GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease
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Tags no duplication Healthcare Global Unique Identifier
From PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
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Tags rare disease platform rare disease patient registries chronic kidney disease
From PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
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Tags Basket Trials rare disease platform rare disease patient registries
From PRUnderground
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