Rare epilepsy community unites for change 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.

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.

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.

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.