The First Ladies of Data

with Ellyn Miller and Amanda Haddock

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Today’s show features groundbreaking innovation for our medical research system to better accommodate the research needs for childhood cancer, inspired from the experiences of both of our guests who witnessed the urgent, unmet needs of children with brain cancer, the leading cause of cancer-related death in children in the United States. Amanda Haddock’s son David lost his life to glioblastoma; his life inspired the beginnings of DragonMaster Foundation (KS), for which the pilot project was to build an open access, collaborative, multi-institutional research infrastructure with high quality informatics and data to empower the next wave of precision medicine approaches for cancer therapeutics. Today this is known as Cavatica, a cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data.

Ellyn Miller, president of Smashing Walnuts Foundation (VA), was called to action by her daughter Gabriella’s journey with DIPG, a walnut-sized deadly tumor in her brainstem. Diagnosed at nine years of age, Ellyn describes how her daughter’s advocacy for other children with cancer in a public spotlight helped attract the support of key lawmakers to introduce the Gabriella Miller Kids First Research Act, signed into law by President Obama in 2014. This legislation initiated the Kids First Pediatric Research Program with NIH, a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. The program was launched in 2015. To date, the program has sequenced more than 20,000 samples from childhood cancer and structural birth defects cohorts. Clinical and genetic sequence data from nine datasets are now publicly available through NIH the database of Genotypes and Phenotypes (dbGaP) and Data Resource Portal.

Both women, forever changed by their experience with childhood cancer and the unthinkable lack of research solutions for them in the form of promising therapies, were prompted to lead in creating programs which provide the valuable resources for present and future multi-institutional and international research collaboration and data-sharing necessary to determining causes and conditions, and providing solutions for, children with cancer and other deadly diseases.

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