Multidisciplinary panel publishes 30 consensus statements to improve communication and shared decision-making in neuroblastoma care
WEST CONSHOHOCKEN: SERB Pharmaceuticals, a global specialty pharmaceutical company designed to address rare and urgent conditions, today announced that “Bridging the Gap: Establishing Consensus for Improving Neuroblastoma Diagnosis and Care Experiences for Patients and Caregivers” has been published in Pediatric Blood & Cancer, the official journal of the American Society of Pediatric Hematology/Oncology (ASPHO). A link to the publication can be found here.
Neuroblastoma, a rare cancer that usually develops in infants and children, presents parents and caregivers with unusually complex, time-sensitive treatment decisions, often while processing a new diagnosis. Many caregivers feel unprepared to evaluate options due to system-level communication gaps that can affect caregiver understanding, engagement, and decision-making throughout the care journey. A council of leading neuroblastoma advocates identified specific information and communication gaps facing families navigating a neuroblastoma diagnosis that can contribute to distress and erode trust in their care teams.
With support from SERB Pharmaceuticals, a multidisciplinary panel reviewed literature, rated guidance, and held iterative discussions to refine 30 statements across six domains including: Critical Encounters, Unmet Educational Needs, Treatment Goals and Management Plan, Ethics, Health Equity, and Patient/Provider Communication. Panel members included neuroblastoma specialists, allied health professionals, a health ethicist, and caregiver advocates. All statements met the predefined threshold for consensus among the panel and reflect alignment on practices likely to improve transparency, communication, and shared decision-making in neuroblastoma.
“The published statements and recommendations help define expectations for patients and caregivers and empower them to play a more active role in the care journey,” said Marcie Reeder, Senior Director, Patient Advocacy & Communications at SERB Pharmaceuticals. “Completing this first phase is an important milestone for the neuroblastoma community, and supporting this initiative reflects SERB’s continued commitment to supporting patients and families.”
Vickie Buenger, President Emeritus of Coalition Against Childhood Cancer and first author of the study, added, “I can say from personal experience that few events disrupt a family like a high-risk neuroblastoma diagnosis, which forces parents to make urgent, complex decisions. These consensus statements are intended to help caregivers navigate complex treatment decisions with greater clarity and support. By providing a framework for transparent communication, shared decision-making, and ongoing support, we can start to bridge the gap between clinical teams and families and empower parents to be partners in their child’s care journey.”
The team plans to present ongoing and future findings at upcoming conferences, including the 2026 NORD Rare Diseases & Orphan Breakthrough Summit in Washington, D.C., this October and the 2027 Advances in Neuroblastoma Research (ANR) meeting in Shanghai next May.
About Bridging the Gap Neuroblastoma
Bridging the Gap Neuroblastoma was created to identify and address unmet educational and support needs among children with neuroblastoma and their caregivers. The need for this guidance originated from discussions within the Neuroblastoma Advocate Advisory Council, which identified specific gaps facing families, including limited empowerment in treatment decision-making, low awareness of peer support services and connection opportunities, and insufficient information about all available treatment options and clinical trial opportunities.
More information about the program, including the full consensus statements, is available at bridgingthegapnb.org.
About SERB Pharmaceuticals
SERB is a fast-growing global specialty pharmaceutical company designed to address rare and urgent conditions by delivering life-saving medicines when time and complexity leave no room for failure. With a model that combines biotech agility and global pharma reliability, SERB operates end-to-end across 100+ countries, ensuring 70+ essential medicines for rare diseases, rare emergency medicine, and medical countermeasures reach patients and clinicians with urgency, wherever and whenever they are needed.
Learn more at https://SERB.com.
Contact:
SERB Pharmaceuticals: Chris Sampson, VP of Communications
chris.sampson@serb.com; Tel: +44 (0)7773 251 178
Media Contact:
LifeSci Communications: Michael Fitzhugh
mfitzhugh@lifescicomms.com
