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Project PACER

Project PACER

Building Capacity for Patient-Centered Comparative Clinical Effectiveness Research (CER) in Shwachman-Diamond Syndrome.

This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASO-42419).

Project PACER logo referencing patient centricity by including patients and families in the graphics. Building Capactiy for Patient-cenetered Comparative Effectiveness Research (CER) in Shwachman-Diamond Syndrome SDS.

Watch the Project PACER Kickoff Meeting to learn more

Project Overview

SDS Alliance awarded PCORI Engagement Award funding to build capacity for patient-centered CER for Shwachman-Diamond Syndrome

 

We are pleased to announce that the Shwachman-Diamond Syndrome Alliance (SDS Alliance) has been awarded funding through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support building capacity for patient-centered Comparative Clinical Effectiveness Research (CER) on Shwachman-Diamond Syndrome (SDS), or Project PACER for short. Eszter Hars, Ph.D. will lead the two-year engagement project (EASO-42419) through the SDS Alliance.

A woman filling our the SDS-GPS survey on a tablet device. Shwachman-Diamond Syndrome Global Patient Survey and Partnering Program
SDS PFDD or EL-PFDD Meeting for Shwachman-Diamond Syndrome social media graphic with magnifying slass focused on a family

The biggest and most impactful patient voice meeting - the SDS PFDD meeting - is a key component of Project PACER. 

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