A first look at the Living Atlas of Rare Epilepsies

At CURE Epilepsy’s Night of Discovery benefit this September, guests got a first look at something we’ve been building for the rare epilepsy community: a tool that lets you type in a gene and watch a map of the people, groups, and data connected to it take shape on the screen.

Expanding international collaborations through Provost’s Global Faculty Awards

We are excited to share that two new Data for the Common Good projects have been selected for funding through the University of Chicago Provost’s Global Faculty Awards.

The Provost’s Global Faculty Awards support international faculty activities that build meaningful research collaborations between UChicago faculty and partners around the world. For D4CG, these awards will support two projects focused on responsible data sharing, data harmonization, and global collaboration in biomedical research: a Latin American Data Sharing and Harmonization Workshop and the launch of the Pan-Asian Health Data and AI Collaborative.

Together, these awards mark the second and third D4CG-affiliated projects to receive support through the PGFA program. In FY2025, the program helped fund our first Data Sharing and Harmonization (DaSH) Workshop in India, which brought together clinicians and researchers from across India to discuss data standards, governance, and pathways for increased participation in the Pediatric Cancer Data Commons (PCDC).

Rally grant will support fertility preservation research

We are grateful to share that Data for the Common Good’s work with the R-HOPE (Reproductive Health Outcomes and Preservation Evaluation) Collaborative will be supported by a grant from Rally Foundation for Childhood Cancer Research.

Building a data commons for orphan blood cancers

Data for the Common Good (D4CG) is excited to announce a new initiative in partnership with our University of Chicago colleague Dr. Michael Drazer: the Orphan Blood Cancers Data Commons, a component of the recently launched Miller Family Center for Rare Blood Cancers at UChicago Medicine.

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.