Sample Project

April 2019

 

Partnered with Eli Lilly and Jumo Health to survey iCAN network for illustrated and written content for two versions of comic books geared at pediatric and adolescent populations to ensure a more appropriate content for educating youth on "What is Clinical Research".

Completed Projects/Activities

  1. April 2019, Partnered with Pediatric Trials Network to send two youth members from KIDS Kansas City and KIDS Michigan, along with their parents to participate in Pediatric Academies Society (PAS 2019) PTN 'Caregiver and Participant Engagement" Panel Discussion with parents and adolescent participants.  

  2. April 2019, Partnered with Eli Lilly and Jumo Health to survey network for illustrated and written content for two versions of comic books geared at pediatric and adolescent population.  Feedback collected and provided to organization to ensure a more appropriate content for educating youth on "What is Clinical Research".

  3. December 2018, Partnered with FDA to send to youth members to share perspectives on Pediatric Technology Development to an open forum discussion as delegates of iCAN.

  4. November 2018, "Perceptions of Transition from Pediatric to Adult Care for Youth with Chronic and Rare Diseases: A Participatory Health Research Project", was presented by youth members through a scientific poster sessions at the American Association of Pediatrics, AAP-NCE, in Orlando, Florida.

  5. October 2018, Partnered with Eli Lilly to survey network on an exciting and fun research project that engages our 'Youth Members' for feedback and participation in a video and survey designed around the concept of "Continuomics – what do YOU think".  

  6. In 2018, the study was turned into a published paper; "Perceptions of Transition from Pediatric to Adult Care for Youth with Chronic and Rare Diseases: A Participatory Health Research Project", authored by El-Sayegh, Lydia; Smith, Sharon; Thompson, Charlie; and Tsang, Vivian W. L.

  7. During 2017, iCAN Youth Council created and implemented a research study using surveys to canvas the process of transitioning from pediatric to adult clinical care across the world.  

  8. August 2016 iCAN Youth Council members helped review documents from the EMA to help influence the development of new laws and regulations for clinical trials in Europe. They reviewed the documents, created a survey for the iCAN network to provide feedback on the different aspects and goals of the project, then summarized the overall feelings of the new protocol. This will have a major impact on the designs and protocol for clinical trials and research studies in Europe in the future once it becomes law.

  9. June 2016 iCAN members surveyed to give feedback on a study plan for a Cystic Fibrosis Enzyme clinical trial. The survey was also sent through Cystic Fibrosis networks with the secondary objective of comparing responses from the iCAN network with responses from children with CF. This will help us understand if children from a cross-therapeutic group like ours give similar feedback as children with the disease being studied.

  10. June 2016 iCAN members between age 8-13 surveyed to get feedback on their experience using Stresslr, a free, interactive resource online to help kids learn how to deal with stress. This tool was developed by researchers from the BC Children’s Hospital in Vancouver, Canada.

  11. March 2016 Kansas City chapter met with a medical IT company to do user testing on an electronic assent program and provide feedback from pediatric patients’ and families’ perspectives. Members are teaming up from Kansas City, Vancouver, and Michigan chapters to help develop a second phase of this project as well as write up a report to share at the 2016 iCAN Summit.

  12. February 2016 Connecticut chapter reviewed an assent template for a major pharmaceutical company and gave feedback on how to improve the document for their pediatric patients.

  13. January 2016 six youth members joined an online focus group to help develop an online, interactive tool funded by the NIH aimed at educating children about pediatric research.

  14. December 2015 seven youth members joined an online focus group with the company developing the gamification app to further develop the storyline and concepts.

  15. November 2015 iCAN members participated in an online survey to give feedback on a storyline for a study gamification app which would be used in a pediatric clinical trial. The aim is increasing retention in the study. 147 young people participated in the survey.

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