PaReNts Project

We are recruiting 20 families — Claim your seat at the CCDS research and drug development table!


ACD has been granted a $238,000 Eugene Washington Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI). This award will empower CCDS families to engage in research and develop a core outcome set that is aligned with what really matters to our families. Watch this short video to learn about the PaReNts Project and how it will give 20 families an opportunity to shape future CCDS research! 

What is required?

  • Viewing of two informational webinars (recordings will suffice)
  • Attendance of an in-person kick-off meeting on June 25th 3:30-6:00 pm
  • Monthly attendance of and participation in a 90-minute Zoom meeting (July 2022-August 2023)

How will ACD support you?

  • ACD will provide compensation for participation in monthly virtual meetings
  • ACD will provide support for travel and accommodations to attend the 2022 CCDS Symposium in Park City, Utah

How will this project support CCDS research?

  • This project will train parents on CCDS research terminology and enable them to better communicate with clinicians
  • Recordings of quarterly meetings will include clinicians around the world and be available for new clinicians and families seeking a better understanding of CCDS
  • The final outcome of this project will be two core outcome sets- one for GAMT and one for CTD, for use across clinical trials, which will guide the determination of success or failure of each drug trial and ensure the presence of the patient’s voice and needs in this process

Who can participate?

  • We encourage CCDS caregivers of all backgrounds and locations to apply. We will not discriminate on the basis of race, color, gender, national origin, age, religion, creed, disability, veteran’s status, sexual orientation, gender identity or gender expression. We encourage underrepresented minorities to apply.
  • While both caregivers are welcome to participate in virtual meetings, we require that at least one caregiver attends all meetings

When will I know if I was selected?

  • We will notify all applicants by April 1st at the latest

When is the deadline to apply?

  • February 28th

What are the training webinars?

  • February 4th – we will hear from Maureen Smith. She will be sharing her experience working with patient groups and informing us on the PCORI network and core outcome sets
  • February 11th – Dr. Stockler will share how this project will be implemented and how the core outcome set will be used by researchers