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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
Tickers
RWD
RWE
Tags
Real World Evidence
rare disease
Timothy Syndrome
From
PRUnderground
The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome
February 17, 2022
Tickers
PRO
RWD
RWE
Tags
pro
patient advocacy
drug development
From
PRUnderground
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
Tickers
RWD
RWE
Tags
international study
patient advocacy
GUID
From
PRUnderground
Alport Syndrome Foundation Joins Pulse Infoframe’s healthie™ Kidney Disease Patient Registry
September 14, 2021
Tickers
RWD
RWE
Tags
Centralized Platform
Real/World Data
rare disease patient registries
From
PRUnderground
PIP-UK to Celebrate Poland Syndrome Community Register Project at Annual Family Conference
August 12, 2021
Tickers
RWD
RWE
Tags
RWD
FDA
Basket Trials
From
PRUnderground
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