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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 rare disease platform Timothy Syndrome
From PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
Tickers PRO RWD RWE
Tags pro validated instruments Myrovlytis Trust
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 CDKL5 GDPR
From PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
Tickers RWD RWE
Tags biotech Healthcare RWD
From PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
Tickers RWD RWE
Tags RWE patient/generated health data rare disease patient registries
From PRUnderground
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