Rare epilepsy community unites for change at CHIMES Rare epilepsy community unites for change at CHIMES
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      • Fanconi Anemia (FRIENDS)
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Rare epilepsy community unites for change at CHIMES

Group photo of participants at CHIMES

For families navigating the complex world of rare monogenic epilepsies, the challenges are profound. Despite the devastating impacts of these diseases, our scientific understanding and ability to treat them effectively remains frustratingly limited. One primary obstacle to research is the inherent difficulty of studying “orphan diseases” that affect small populations, compounded by data isolated in institutional silos.

At Data for the Common Good, we’ve seen firsthand how breaking down these barriers can accelerate discovery. Our work with the Pediatric Cancer Data Commons has demonstrated the transformative power of collaborative data sharing for rare diagnoses. Now, with support from the Chan Zuckerberg Initiative, we have the opportunity to work with experts, advocates, and families in the rare epilepsy community to develop a similarly transformative approach for these difficult-to-study diseases.

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D4CG and Google Summer of Code

Data for the Common Good (D4CG) is in the midst of our second year as a mentoring organization for Google Summer of Code (GSoC). After a successful inaugural year with the program last summer, we are excited to continue fostering the next generation of developers as they contribute to enhancing our projects and tools.

Google Summer of Code is a global, online program that connects students and new developers with open source organizations for 12+ week programming projects. For organizations like D4CG, the program is an opportunity to explore new development projects while providing valuable mentorship to emerging developers. The high level of interest in D4CG’s projects among GSoC applicants demonstrates the growing appeal of our mission-driven approach to technology: in 2024, our first year participating, we received 242 proposals and were allocated four contributor slots instead of the typical three for new organizations. This year, interest grew to 365 proposals, and we are again working with four contributors.

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Celebrating 20 years of INRG

This spring, we celebrate the twentieth anniversary of the International Neuroblastoma Risk Group (INRG), whose international collaboration has made strides for neuroblastoma treatment, inspired similar groups for other diseases, and laid the foundation for the Pediatric Cancer Data Commons.

It has been twenty years since neuroblastoma researchers from major cooperative groups in North America, Europe, and Japan met in Whistler, British Columbia, Canada to establish a consensus approach for pre- treatment staging and risk stratification for neuroblastoma patients. This meeting resulted in the formation of the International Neuroblastoma Risk Group (INRG), producing an initial cohort of 8,800 patients, all harmonized to a single data standard.

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In the news: NIH indirect cost loss calculator

Hubert Hickman, D4CG’s Senior Data Strategist and Data Operations Lead, created a calculator to help understand the potential impact of the cuts to NIH federal research funding for indirect costs proposed in a February 7 memo.

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DaSH workshop brings D4CG team to India

This month, six members of the D4CG team had the opportunity to travel to India to build and strengthen our collaborations and learn from our colleagues there. Support from a University of Chicago Provost’s Global Faculty Award allowed us to make this trip, which included visiting Bai Jerbai Wadia Hospital for Children and Tata Memorial Hospital in Mumbai and Rajiv Gandhi Cancer Institute & Research Centre in Delhi as well as conducting our first Data Sharing and Harmonization (DaSH) workshop.

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Science Spotlight: A pathway to enriching the PCDC with real-world treatment data

Welcome to the Science Spotlight, where we highlight the scientific advancements made possible by our consortia and data commons.

A new D4CG paper explores a promising automated method to extract real-world treatment data from electronic health records and integrate it into the PCDC, potentially transforming how we study childhood cancer treatments.

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Feature in Medicine on the Midway

How an informatics expert is harnessing big data to ‘revolutionize’ pediatric cancer breakthroughs

Published in Medicine on the Midway | May 14, 2024

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Science Spotlight: MaGIC

Welcome to the Science Spotlight, where we highlight the scientific advancements made possible by our consortia and data commons.

In this Science Spotlight, MaGIC highlights three Department of Defense grants they have recently received in their core areas of research: clinical research, clinical trial development, and biologic research. Each grant is an example of the collaborative innovation and team science made possible by participation in MaGIC. The clinical and genomic data resulting from all of these projects will, of course, be fed back into the GCT data commons, which continues to grow thanks to the hard work of MaGIC members and the PCDC team.

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PCDC named Champion of Open Science by White House

We are extremely honored to share that the Pediatric Cancer Data Commons has been named one of five Champions of Open Science by the White House Office of Science and Technology Policy (OSTP). These awards highlight efforts that tackle problems by broadening access to research so that everyone can benefit from science and technology. The PCDC and the other four winners “exemplify what’s possible with an open, equitable, and secure research enterprise.”

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PREDICT featured in UChicago Medicine Giving

The Gray Foundation invests in collaboration seeking diabetes treatments

Published in UChicago Medicine Giving | February 15, 2024

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Recent Posts

  • Rare epilepsy community unites for change at CHIMES
  • D4CG and Google Summer of Code
  • Celebrating 20 years of INRG
  • In the news: NIH indirect cost loss calculator
  • DaSH workshop brings D4CG team to India

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