iCAN Member and Community Research
Posters & Papers
The culture of research communication in neonatal intensive care units: key stakeholder perspectives
2021 Authors Include: Jennifer Degl, Ronald Ariagno, Judy Aschner, Sandra Beauman, Wakako Eklund, Elissa Faro, Hiroko Iwami, Yamile Jackson, Carole Kenner, Ivone Kim, Agnes Klein, Mary Short, Keira Sorrells, Mark A. Turner, Robert Ward, Scott Winiecki, Christina Bucci-Rechtweg, International Neonatal Consortium
2022 Authors Include: J. Preston, B. Nafria, A. Ohmer, S. Gaillard, P. Dicks,
L. West, M.A. Turner
Talking to Teens About Clinical Research: The Development of Educational Brochures By and For Youth
2022 Elisa Koppelman, MSW, MPH, Walker Morrell, MBE, Ava Glazier, Amanda Shih, Barbara E. Bierer, MD. on behalf of the MRCT Center Pediatrics Project Working Group.
Engaging Youth Throughout Product Development: Why, When, Who, and How
2022 Elisa Koppelman, MSW, MPH, Barbara E. Bierer, MD. on behalf of the MRCT Center Pediatrics Project Working Group.
Understanding the complexities of the U.S. healthcare system: Systematic social barriers that are preventing people with invisible illnesses from receiving the healthcare they need
2021 Author: Ohmer, Reece
Transition from Pediatric to Adult Care for Youth with Chronic Diseases: Youth, Caregiver, and Provider Perceptions
2021 Authors include, Tsang, Vivian W. L. MD, MGC*; Fletcher, Sarah*; Jassemi, Sara MD, FRCPC†; Smith, Sharon MD, FAAP
Video Abstract: Transition from Pediatric to Adult Care for Youth with Chronic Diseases: Youth, Caregiver, and Provider Perceptions
2021 Authors include, Tsang, Vivian W. L. MD, MGC*; Fletcher, Sarah*; Jassemi, Sara MD, FRCPC†; Smith, Sharon MD, FAAP
Facilitators and Barriers to the Training and Maintenance of Young Person's Advisory Groups (YPAGs)
2019 iCAN Authors include, Tsang, Vivian W.L., Chew, Siaw Yee, Koh, Sara, Fletcher, Sarah, Goddard, Grant, ElSayegh, Lydia, Stones, Simon, Ainsworth, Sophie, Ohmer, Reece, Woods, Hampton, Haygood, Jake, Ohmer, Olivia, Junker, Anne K., Faculty of Medicine, University of British Columbia, Vancouver, BC Canada British Columbia Children’s Hospital, Vancouver, BC Canada
3International Children’s Advisory Network (iCAN)
Role of the Patients and Parents in Pediatric Drug Development
2019 iCAN Authors Vivian L.S. Tang, Leanne West, MS, Christine Woods, BS, Chester J Koh, MD, Susan McCune, MD, Theresa Mullin, PhD, Sharon R. Smith, MD, Segolene Gaillard, MS, Joana Claverol, MS, Begonya Nafria, MS, Jennifer Preston, PhD, Pamela Dicks, PhD, Charles Thompson, MD, FCAP share insight to the Role of Patients and Parents in Pediatric Drug Development.
International Children’s Advisory Network: A Multifaceted Approach to Patient Engagement in Pediatric Clinical Research
Authors Meghan Gwara, BS, Sharon Smith, MD, Christine Woods, BS, Elizabeth Sheeren and Hampton Woods share how iCAN Research is formed as a pediatric collaborative for support within pediatric clinical trials, patient advocacy, innovation, research, science and support within the global pediatric healthcare community.
Supporting children and young people when making decisions about joining clinical trials: qualitative study to inform multimedia website development
Jenny Preston, GEN R, and expert team, release exciting and informative research paper.
Overview: To understand stakeholder's views regarding the content and design of pediatric clinical trial multimedia websites.
Setting: One UK Children's Hospital and One Young Persons' Advisory Group (YPAG).
Perceptions of Transition from Pediatric to Adult Care for Youth with Chronic and Rare Diseases
Presented at the Southeastern Pediatric Research Conference, 2018
and
the American Academy of Pediatrics Section on Advances in Therapeutics and Technology (SOATT), 2018
iCAN, FCAAP, and Florida Residency Programs Join Forces to Advocate for Kids
Presented at the American Academy of Pediatrics Family Partnership Network Meeting, 2018
Assessment of a shortened informed consent form for pediatric research: a pilot study
41 iCAN Youth Members contributed to the project during the 2017 iCAN Summit
Authors: Peter D. Murray, Barbara E. Bierer, Steven Hirschfeld, Andreas K. Klein and Jonathan M. Davis
iCAN: Providing a Voice for Children and Families in Pediatric Research
Presented at the DIA, 2015
Authors: Hadleigh Thompson1, Nicholas Frederico, BS1, Sharon R. Smith, MD2, Manil Chowdhury, BA3, Pamela Dicks, PhD4, Jennifer Preston, PhD5, and Charles Thompson, MD6