PAReNts 2.0: ExCiTE

A $249,650 funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), was announced by ACD in June 2024. The funds will support a project titled “Parents Advancing REsearch NeTworkS 2.0: Expand Community, Tools, & Engagement (PAReNts 2.0: ExCiTE).”

The primary objective of this project is to develop “Considerations for CTD & GAMT Outcome Measurement Tools” as a companion to our “CTD and GAMT Core Outcome Set (COS)”.

PAReNts 2.0 Project Timeline and Overview

PAReNts 1.0

In November 2021, ACD was granted a $238,000 Eugene Washington Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI).

This project, led by ACD’s Executive Director Heidi Wallis and Dr. Sylvia Stockler as co-Project Leads, empowers CCDS families to engage in research and develop a core outcome set for CCDS that is aligned with what matters to our families. This will ultimately enable the success of any clinical trials and open up the potential for precision medicine (n=1 trials) to treat CCDS.