Courageous Parents Network (CPN), the nonprofit organization and digital platform bringing educational resources to families and medical providers caring for seriously ill children launched a new digital unit called “Evaluating Clinical Trial Option,” which marks the observance of worldwide Rare Disease Day on Feb. 29. The new unit is designed to employ documents, podcasts, and video interviews to help families navigate consideration of clinical trial participation.
TrialSite News breaks down this information for interested readers.
What is the purpose of the new digital unit “Evaluating Clinical Trial Option”?
In the rare disease space, the fast-evolving landscape of potential new therapies and associated clinical trials offers great hope of heretofore not available treatment options; however, on the other hand, there is so much change, it is difficult to keep up with, and few people know how to navigate the world of clinical trials. Not understanding this process can open up a family to pain and heartbreak—e.g. they aren’t eligible for the clinical trial, etc.
While parents’ number one goal is the health of their child, the trial’s goal is about the advancement of common good. Hence, CPN seeks to provide an easy to access, navigate and understand platform to help “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.”
Why is dealing with family grief especially important?
Families that have children with rare disease face particularly challenging conditions. All parents want to have their children survive them and not the other way around. It perhaps is the most painful thing anyone could ever face. Hence, when there is an opportunity for a child with a rare disease and in dire condition to participate in a clinical trial, and they are rejected, for example, the family will experience tremendous pain, and having resources that can support the family during this kind of situation is important. Knowing that there are others going through the same situation; hearing and sharing stories, connecting with others—underlies the premise of the offering.
What kinds of content does the new digital unit offer?
Content available to help families understand clinical trials 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
What is the cost and availability of Evaluating Clinical Trial Option?
Free of charge/available 24×7
Who is helping to pay for this?
The following biopharmaceutical sponsors are helping to pay for this service: Sanofi Genzyme, Bridgebio, Aspa Therapeutics, AveXis (Novartis), BioMarin, bluebird bio, REGENXBIO and Amicus Therapeutics.
Comment: TrialSite News at some point will perform a periodic review of content.
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.
Call to Action: For those interested, check out the website.