Baltimore, April 28, 2019 - Members of the International Children Advisory Network (iCAN) spoke on behalf of pediatric patients living with rare, chronic, and complicated disease to help spark further advancements in research, quality improvement, healthcare, advocacy, techonology and innovation within pediatric medicine at the Pediatric Academic Society (PAS) conference through partnership with Pediatric Trials Network (PTN) and Duke Clinical Research Institute (DCRI).
iCAN hosts 23 international Kids Impacting Disease through Science (KIDS) chapters across their broad network that include young people from ages 8-18 as representatives of all children living with disease.
Two iCAN KIDS members, Sophia Klaudt, age 16, (KIDS Kansas City) and Reece Ohmer, age 17, (KIDS Michigan) both shared their inspiring stories of how kids are experts in their own care, understand and desire the highest outcomes of health, and are working to improve areas such as pediatric clinical research, transition, and advance medicine and technology through innovation within the iCAN Network. The talk, titled Caregiver and Participant Engagement, included a robust opening of idea sharing with pediatric patient voices at the center of discussion.
The youth talk led to a wonderful panel talk with iCAN parent, Julie Klaudt, and moderated by
Amy Ohmer, parent and Director, iCAN. Audience discussion questions included thoughts on patient medicine adherence, patient motivation, study awareness and involvement. There was also a robust discussion on transitioning from pediatric to adult clinic and how to best incorporate pediatric patients into the discussion through iCAN.
About the Pediatric Trials Network - PTN is an alliance of more than 100 research sites across the globe cooperating in the design and conduct of pediatric clinical trials. Data from PTN trials help regulators revise drug labels for safer and more effective use in infants and children. The PTN is sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
To learn more about iCAN, visit www.icanresearch.org and register for the 5th Annual iCAN Research & Advocacy Summit to be held in Kansas City, MO from June 24th - June 28th, 2019. Patients like Klaudt and Ohmer will be on hand to share their expertise and insight into the world of pediatric medicine from a patient perspective.