Proposed Solution to the Problem: On February 28 and 29, building on developing stakeholder/clinician relationships, a 1.5-day meeting will take place in Cincinnati, Ohio with specific objectives aiming to fill the above-mentioned gap.
- Consolidate an engaged collaborative (hepatoblastoma community) integrating clinical researchers and patient/parent stakeholders to advance an agenda focusing on hepatoblastoma patient-reported outcomes beyond cure; advance knowledge and awareness on the management of controversial issues related to hepatoblastoma care including treatment of relapsed/refractory disease; and standardization of care for such affected patients for whom front-line therapy is not ideal or inadequate.
- Identify key priorities for focus of hepatoblastoma community related to patient-reported outcomes and clinical effectiveness standards and advancements.
- Develop organization for a sustainable effort going forward to bring action to priority items.
- Establishment of a defined hepatoblastoma engagement community composed of researchers and stakeholders
- A list of key priorities (research agenda)
- Structured organization
- Pathways for results dissemination