OTHR-22. SUCCESSFUL DEVELOPMENT OF RESOURCES FOR DMG/DIPG PATIENT FAMILIES THROUGH A NETWORK OF FAMILIES, RESEARCHERS, AND CARE TEAMS

Abstract

Abstract The DIPG community has been severely affected by a lack of resources and awareness due to the relative rarity of the disease. In recent years, this has led to a network of patient families, researchers, and clinicians who have worked together to develop resources that improve clinical care, research, and patient family support. These resources address issues in care equity such as access to clinical trials, accurate information, and consults with leading physicians in the field. These initiatives span across multiple institutions and are predominantly little to no cost for the families. This relationship is mutually beneficial; data from patient families inform researchers and clinicians. In turn, researchers and clinicians use these findings to support other families. Over the last five years, many of the resources developed and/or utilized by the DIPG community have been successful. Since May 2021, 42% of post-mortem tissue donations through Gift From a Child have been DIPG or DMG. Data from this tissue is shared openly through the Children’s Brain Tumor Network, ensuring that a diverse patient population is represented in future research projects. DIPG One-link helps patient families navigate vetted resources for care at any point after diagnosis. Resources include patient navigators, information about research and clinical trials, emotional and grief support, places to safely share their data, and referrals to the DIPG/DMG National Tumor Board. All of these resources have shown an overall increase in use since implementation. There has also been an increase in access by patient populations and care teams that previously would have been unable to access such important resources. The direct involvement of patient families ensures that patient voices are represented and valued. These resources are essential to removing institutional, financial, geographic, and health literacy barriers, and ensuring all future patients have equitable access to care.