In a united effort to combat childhood brain cancer, Slalom has worked with Amazon Web Services (AWS) and the DIPG DMG Research Funding Alliance (DDRFA) to create the DIPG One Link, a unique centralized resource hub that helps accelerate research and awareness of Diffuse Intrinsic Pontine Glioma (DIPG), also known as Diffuse Midline Glioma (DMG). The new technology can save time for parents and caregivers who are looking for quick resources to help their loved ones.
DIPG DMG is a rare and often fatal form of childhood brain cancer with limited treatment options and scarce research data. The DIPG One Link provides crucial resources to affected families in support of Cancer Moonshot, a White House initiative to prevent more than 4 million cancer deaths by 2047 and improve the experience of people who are touched by cancer.
“As parents fighting DIPG alongside our children we discovered significant gaps in the system which expects parents to navigate their child’s care. When diagnosed, parents face this tumor which traps these otherwise healthy children inside their body. The life expectancy at diagnosis is just six to twelve months and is the leading cause of death by illness in children. Parents are told to go home and make memories,” explained Lisa Ward, who led the DIPG OneLink Initiative.
With AWS, Slalom executed the research, design, and development of the DIPG One Link website to support those looking for information to fight DIPG DMG. The website not only empowers parents with up-to-date care information but also provides critical pathways to educate and encourage DIPG DMG patient data donations.
“The complexity of this disease means that every minute counts after receiving your initial diagnosis,” said David Frigeri, managing director at Slalom and leader of its Artificial Intelligence/Machine Learning practice in Philadelphia. “Researchers are attempting to find a cure for this complex cancer in real-time while caretakers are doing their own due diligence to find a trial or custom treatment for their child. We must improve the ability to get data for everyone into one place as quickly as possible – DIPG One Link is something we’ve designed and developed to help.”
Since fragmented and limited patient data is a significant hurdle to current DIPG DMG research, maximizing the amount of information extracted from patient data donations – such as clinical records, imaging, blood samples, data sequencing, central nervous system tissues, and more – can lead to breakthroughs in research and drive the discovery of new treatments.
“Before DIPG OneLink, there was no one place for parents to find new best practices for treating DIPG, where the standard of care is over sixty years old. In the last two years, with help from our best clinicians, as parents we created and continue to fund a nationwide nurse navigation system, a national tumor board of our best DIPG clinicians, and patient driven opportunities to share data. AWS and Slalom used our parent centered content and linked our efforts with existing services in one beautifully created, and generously contributed, roadmap for care, appropriately named DIPG OneLink,” said Ward.
DIPG One Link is Slalom and AWS’s first step toward building a health data technology platform that will fuel studies conducted by the Children’s Brain Tumor Network, a consortium of 32 independent research institutions across the United States. By harnessing the power of donated data, these institutions will be better enabled to save the lives of children with DIPG DMG and work toward a brighter future without childhood cancer.
“AWS is proud to be working with Slalom and DDRFA in continued support of accelerating Cancer Moonshot,” said Dr. Rowland Illing, Chief Medical Officer and Director of International Public Sector Health at AWS. “Optimizing data can help researchers make progress against the most deadly and rare cancers, including childhood cancers, and bring us closer to the Moonshot’s goal of ending cancer as we know it.”
Source: Slalom
