About

Purpose​

The purpose of Prepare-NS is to develop and validate publicly available clinical outcome assessments (COAs) of fluid overload (FO) fit for drug development for a range of nephrotic syndrome (NS) inducing rare chronic kidney disorders.

Core Team

Committees

The Extrenal Technical Advisory Committee (ETAC) 

The External Technical Advisory Committee (ETAC) represents the foremost experts on Core Outcomes Assessment (COA) development and evaluation for regulatory use.  They play an active role in guiding scientific aspects of the project, guiding logistical and programmatic elements, and participate in Planning, Evaluation/Validation, and Dissemination project phases.

The Clinical Expert Panel (CEP)

​The Clinical Expert Panel (CEP) will participate in scheduled meetings and opportunities for electronic input.  The panel will respect an open dialogue and make decisions by consensus.  The group will also participate in evaluation of the Clinician Engagement approach, so that improvements to maximize contributions from all participants can be realized.

The Stakeholder Engagement Group (SEG) 

​The Stakeholder Engagement Group (SEG) is comprised of patients and caregivers, as well as representatives with drug development, patient-centered science, patient advocacy and engagement, payer, and clinical expertise. The group will participate in scheduled meetings and opportunities for electronic input.  The panel will respect an open dialogue and make decisions by consensus.  The group will also participate in evaluation of the stakeholders , so that improvements to maximize contributions from all participants can be realized.