Join the CKiD Participant and Family Council (PFC)

What is the Participant and Family Council?

The CKiD Study has a Participant and Family Council (PFC) made up of doctors, ethics experts, and about 20 CKiD participants and parents/guardians. We’re looking for more members to join!

The council talks about and provides input on important topics related to how the CKiD Study works. For example, one topic includes whether or not to share certain information, like genetic results, with participants and families.

No personal health information is documented within the group. Members can share their thoughts or personal experiences if they feel comfortable.

Meeting Schedule & Participation

• Most PFC meetings will be held via video conference.
• Meetings occur every two months and last approximately 1 hour.
• You may also be invited to attend the annual CKiD meeting with study coordinators and Primary Investigators (study doctors).
• If you attend the annual meeting, the CKiD Study will pay for your transportation, lodging, food, and travel.

Your Role & Contribution

Your experiences as a participant or family member are extremely valuable and very important. You don’t need any medical background, just your thoughts and ideas. By joining the PFC, you’ll help guide decision about how the study works and what we learn.

You must be 18 years of age or the parent/guardian of a participant to join.  

Voluntary Participation

Joining the PFC is completely voluntary. Your medical care and participation in the CKiD Study will not be affected if you choose not to join. There is no penalty or loss of benefits if you decide not to participate, and you may leave the PFC at any time.

Interested in Joining?

Joining is easy! If you are interested, please contact Cozumel Pruette, MD at csouthe1@jhmi.edu.