Courageous Parents Network deeply values community engagement in research. Participatory research is a process in which members of the population being studied are subject matter experts and collaborators, rather than just participants in the research. CPN brings to this research the perspective of parents and caregivers of children with a serious medical condition, including rare disease and life-limiting illness. u003cbru003eu003cbru003eThe engagement of parents and caregivers in research can happen at any time in the research process, and CPN believes that earlier involvement is beneficial. Parents and caregivers bring forth deep and varied perspectives. They are unique in their position as they have developed expertise across the entire caregiving journey, whereas researchers typically investigate a specific aspect or period of time within the pediatric patient’s life. Parents can work with researchers to develop research questions, identify ways to collect the most relevant data from participants, bring advice to help overcome barriers to research participation, and even provide insights on the interpretation of study outcomes. In short, involving parents and caregivers in research helps ensure that the findings are meaningful, relevant and helpful to all the constituents the study is intended to serve.u003cbru003eu003cbru003eCourageous Parents Network partners with researchers from all disciplines who are committed to better outcomes for families affected by pediatric medical conditions. u003cbru003eu003cbru003eIf you are interested in working with Courageous Parents Network, please contact u003ca href=u0022mailto:connect@courageousparentsnetwork.testu0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003econnect@courageousparentsnetwork.testu003c/au003e. u003cbru003eu003cbru003eBelow are some of the studies that the organization has proudly collaborated in:u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2787264u0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eAssociation Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Healthu003c/au003eu003cbru003eu003c/strongu003eu003cemu003eJAMA Open Network, December 2021u003cbru003eu003c/emu003eChris Feudtner, MD, PhD, MPH; Russell Nye, PhD; Jackelyn Y Boyden, PhD, MPH, RN; Katherine E Shwartz, MD; Emilie R. Korn, MD; Aaron G. Dewitt, MD; Amy T. Waldman, MD, MSCE; Lisa A. Schwartz, PhD; Yuming A. Shen, PhD; Michael Manocchia, PhD; Rui Xiao, PhD; Blyth T. Lord, EdM; Douglas Hill, PhD.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://publications.aap.org/pediatrics/article/148/5/e2021052054/181340/Parents-as-Advocates-for-Pediatric-Palliative-Care?autologincheck=redirectedu0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eParents as Advocates for Pediatric Palliative Careu003c/au003eu003c/strongu003eu003cbru003eu003cemu003ePediatrics, October 2021u003c/emu003eu003cbru003eBlyth Taylor Lord, EdM; Wynne Morrison, MD, MBE; Richard D. Goldstein, MD; Chris Feudtner, MD, PhD, MPH.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://www.cambridge.org/core/journals/cardiology-in-the-young/article/abs/state-of-the-science-and-future-research-directions-in-palliative-and-endoflife-care-in-paediatric-cardiology-a-report-from-the-harvard-radcliffe-accelerator-workshop/E7D5DD9179D5B88B56069081563650ECu0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eState of the science and future research directions in palliative and end-of-life care in pediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshopu003c/au003eu003c/strongu003eu003cbru003eu003cemu003eCardiology in the Young, June 2021u003c/emu003eu003cbru003eMelissa Cousino, PhD; Blyth Lord, MEd; Elizabeth Blume, MD.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://publications.aap.org/pediatrics/article/147/5/e2020042044/180848/Supporting-Families-Considering-Participation-in-au0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eSupporting Families Considering Participation in a Clinical Trial: Parent-Provider Perspectivesu003c/au003eu003c/strongu003eu003cbru003eu003cemu003ePediatrics, May 2021u003c/emu003eu003cbru003eTerence R. Flotte, MD; Blyth Taylor Lord, EdM; Jennifer Siedman, MEd.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://www.jpsmjournal.com/article/S0885-3924(20)30635-7/fulltextu0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eWhat Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting? u003c/au003eu003c/strongu003eu003cemu003eJournal of Pain and Symptom Management, January 2021u003c/emu003eu003cbru003eJackelyn Y. Boyden, PhD, MPH, RN; Mary Ersek, PhD, RN, FPCN; Janet A. Deatrick, PhD, RN, FAAN; Kimberley Widger, PhD, RN, CHPCN(C); Gwenn LaRagione, BSN, RN, CCM, CHPPN; Blyth Lord, EdM; Chris Feudtner, MD, PhD, MPH.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://www.mdpi.com/2227-9067/7/12/265u0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eHonoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey u003c/au003eu003c/strongu003eu003cemu003eu003cbru003eChildren, December u003c/emu003e2020, u003cemu003e7u003c/emu003e, 265u003cbru003eMeaghann S. Weaver, MD, MPH; Marie L. Neumann, MA; Blyth Lord, MEd; Lori Wiener, PhD, DCSW, LCSW-C; Junghyae Lee, PhD; Pamela S. Hinds, RN, PhD, FAAN.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://doi.org/10.1016/j.jpainsymman.2019.08.007u0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eLetter to the Editor: Parent Perspective and Response to Challenges and Priorities for Pediatric Palliative Care Researchu003c/au003eu003cbru003eu003c/strongu003eu003cemu003eJournal of Pain and Symptom Management, Volume 58, Issue 5, November, 2019.u003c/emu003eu003cbru003eSandra Clancy, Blyth Lord, Michelle Moon, Brenda Murray, Kerri Padgett, Bob Searle, Jennifer Siedman, Barbara Swoyer.u003cbru003eu003cbru003eu003cstrongu003eu003ca href=u0022https://www.sciencedirect.com/science/article/abs/pii/S1056499318306461?via%3Dihubu0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eMaking Meaning After the Death of a Childu003c/au003eu003c/strongu003eu003cbru003eu003ca href=u0022https://www.sciencedirect.com/science/journal/10564993u0022 target=u0022_blanku0022 rel=u0022noreferrer noopeneru0022u003eu003cemu003eChild and Adolescent Psychiatric Clinics of North Americau003c/emu003eu003c/au003eu003cemu003e, volume 27, Issue 4, October 2018.u003cbru003eu003c/emu003eSandra Clancy, PhD; Blyth Lord, EdM.u003cbru003e
