Recent iCAN Projects

SPOTLIGHT

 

March, 2020

iCAN in collaboration with Eli Lilly, releases white paper as a follow-up to the 2018 iCAN Summit focus group in which youth members shared feedback on at-home blood sampling.  To read more, visit Applied Clinical Trials, Volume 29, Issue 3 "Do-It-Yourself Blood Sampling for Pediatric Clinical Trials" by Enaksha Wickremsinhe, Mary Short, Brandon Talkington, Leanne West

Completed Projects/Activities

  1. March, 2020, Applied Clinical Trials, Volume 29, Issue 3 by Enaksha Wickremsinhe, Mary Short, Brandon Talkington, Leanne West authored and published "Do-It-Yourself Blood Sampling" for Pediatric Clinical Trials through partnership with Eli Lilly and iCAN.  Link: http://www.appliedclinicaltrialsonline.com/do-it-yourself-blood-sampling-pediatric-clinical-trials.

  2. February, 2020, iCAN Youth Member, age 16, and parent, were invited to participate in the U.S. Food and Drug Administration (FDA), Office of Health Technology -7’s (OHT-7), Public Workshop on the Evolving Role of Artificial Intelligence in Radiological Imaging, on February 25-26, 2020 at the National Institutes of Health, Natcher Conference Center, Bethesda MD. 

  3. January, 2020, iCAN invited to speak at the global Pfizer 2020 Pediatrics Day held in New York City to share awareness of the need to include pediatric patient voice within all facets of pediatric clinical research.  

  4. November, 2019, Partnered in the collaboration of PRA Health Sciences World Childrens Day event, led by Kirsten Sherman Cervatti, Sr. Director, Center for Pediatric Clinical Development. During this special day, it was recognized that children have the right to safe and effective pediatric medicines and treatments. iCAN was invited to send two young people to share their story of living with a chronic, rare, and complicated diagnosis as well as, to discuss their personal experiences of participating in clinical research. Along with representatives from iCAN, expert speakers from UNICEF, Jumo Health, CISCRP, LSU-Shreveport, and SPROUTEL presented their own positive support for ensuring the highest quality of care for children throughout pediatric medicine and within clinical research.

  5. November, 2019, Partnered with the FDA to send seven iCAN Youth Members, ages 10-17, from KIDS Michigan, KIDS Illinois, KIDS Houston, iCAN Virtual Chapter to visit the headquarters located in Silver Springs to participate in an all-day Pediatric Patient Caregiver symposium called Advancing the Development of Pediatric Therapeutics (ADEPT 6) Workshop in which patients answered questions on medicines and medical devices.

  6. October, 2019, Published iCAN Overview in the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SOATT) Fall Newsletter, page 20.  https://downloads.aap.org/AAP/PDF/soatt_newsletter.pdf

  7. October, 2019, Established two new iCAN Chapters, KIDS Los Angeles and KIDS Upper Pennisula (Michigan).  

  8. October, 2019, Hosted a booth at the American Academy of Pediatrics 2019 National Conference and Exhibition in New Orleans, LA.  

  9. September, 2019, Visited the annual Global Genes Summit in San Diego, CA to help support pediatric advancements in orphan and rare diseases.  

  10. August, 2019, established a new iCAN Chapter, KIDS Germany.  

  11. August, 2019, Partnered with MCRT, in collaboration with Harvard University to provide pediatric perspective on the development of clinical research.  

  12. July, 2019, Hosted the 5th Annual iCAN Summit in Kansas City, MO in partnership with KIDS Kansas City and Children's Mercy Hospital.

  13. July, 2019, Partnered with the Pediatric Trials Network, at Duke University to provide insight to pediatric patient centered research.  

  14. July 2019, Partnered with Pfizer to implement a pediatric survey for clinical research.

  15. 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.  

  16. 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".

  17. 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.

  18. 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.

  19. 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".  

  20. 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.

  21. 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.  

  22. 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.

  23. June 2016 iCAN Youth 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.

  24. 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.

  25. 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.

  26. 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.

  27. 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.

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

  29. 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.