PaReNts Project

 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.