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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
March 24, 2022
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Timothy Syndrome
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The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
February 17, 2022
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validated instruments
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Ensuring No Duplicates: Implementing Pulse Infoframe’s GUID Model to Transfer and Link Patient Data from Study to Registry for Rare Disease
November 23, 2021
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CDKL5
Patient Registries
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Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
September 14, 2021
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Real World Evidence
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Healthcare
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PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
August 12, 2021
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PGHD
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