Boston, MA, February 25, 2020 -- Courageous Parents Network (CPN), a 501(c)(3) nonprofit organization and digital platform bringing educational resources to families and medical providers caring for seriously ill children, today announced the release of a new digital unit, “Evaluating the Clinical Trial Option.” Timed to mark the observance of worldwide Rare Disease Day on Saturday, Feb. 29, the new unit employs documents, podcasts and video interviews to help families navigate consideration of clinical trial participation.
Great Hope of Treatment--With Potential Pitfalls
According to CPN Founder and Executive Director Blyth Taylor Lord, a bereaved parent whose child suffered from a fatal disease, the fast-evolving landscape of potential new therapies and associated clinical trials offers great hope of treatments. Rare Disease Day, she says, will celebrate the many accomplishments and promise of new innovations in the pipeline. At the same time, she notes, “these new developments come along with potential for grief, if the child is not accepted into a trial or if the new treatment does not perform as hoped.
“Not understanding the process, with all of its implications, can leave the family vulnerable to new heartbreak. While every parent will be thinking about what participation may mean for their own child, the trial process is about advances for the greater good--the benefits to many. One of our goals is to
present a clear-eyed picture, through the lens of families and medical professionals, to empower parents
and their children to make choices that work with their values.”
“Evaluating the Clinical Trial Option” Content
Sample content from CPN “Evaluating the Clinical Trial Option” unit includes
-
Video excerpts from parent interviews, revealing the hopes, dreams and fears of families
-
Video excerpts from interviews with a principal investigator, trial coordinator, and a family services director—and “sound stories” (podcasts) that explain the process, along with potential risks and rewards
-
Blog posts
-
Supplementary downloadable guides, providing reference information specific to family questions, needs and concerns
The unit, which is available free of charge, 24/7, to families and providers, is funded in part through the support of Sanofi Genzyme, Bridgebio, Aspa Therapeutics, AveXis, BioMarin, bluebird bio, REGENXBIO and Amicus Therapeutics.
Meeting a Critical Need
According to National Tay-Sachs and Related Disease (NTSAD) Director, Family Services Diana Pangonis, [We must be prepared to] “guide those families that face the challenges of participating, and comfort those families who are reliving the enormity of grief as they learn their child will not be included in a trial. We are pleased that CPN has taken on the task of creating an entire unit devoted to the social-emotional aspects connected to clinical trials in the rare disease space.”
Dawn Mariano, mother of Vayle, added, ““These resources remind you that there are others going through this journey with you, navigating life with a medically fragile child. Hearing other parents’ stories, their hopes and fears, you know you’re not alone, and you can be comforted knowing there is a network, a community, working so hard for you and your precious child.”
Available Free of Charge, 24/7
To view and explore “Evaluating the Clinical Trial Option” visit https://courageousparentsnetwork.org/topics/clinical-trial
About Courageous Parents Network
CPN is a 501(c)(3) whose mission is to empower, support and equip families and providers caring for children with serious illness. CPN’s vision promotes the family's journey as one in which they have confidence in their ability to be the best caregivers they can possibly be, resulting in minimal regret and maximal healing; and that pediatric medical providers feel increased success in delivering family-centered care. For more information visit CourageousParentsNetwork.org.
