Building a Blueprint for CDH1 Research: the GASTRIC Consortium CGA-IGC Research Collaboration Podcast Series – Episode 2

Zachariah H Foda, MD, PhD - CGA-IGC Communications Committee Member

In this second episode of the CGA-IGC Research Collaboration Podcast Series, hosted by Emma Keel, MS, CGC and featuring Ophir Gilad, MD, a research fellow at the University of Chicago, shares the compelling journey behind the creation of the GASTRIC (Group of investigAtors STriving toward Research In CDH1) multicenter consortium, a groundbreaking initiative addressing critical knowledge gaps in CDH1-related gastric cancer.

Dr. Gilad details the genesis of the consortium, highlighting the initial uncertainty surrounding CDH1 management and the wide range of reported lifetime gastric cancer risks (7-80%).  The lack of clarity on which CDH1 carriers would develop invasive cancer prompted the collection of data from the University of Chicago’s registry. Early analyses of endoscopic and histologic findings, presented at major conferences like DDQ and the CGA-IGC Annual Meeting, sparked significant interest and paved the way for collaboration. Dr. Sonia Kupfer, MD, who had led previous multi-center work on CDH1 and colorectal cancer, encouraged expanding this effort into a full consortium. The success of initial presentations at conferences led to the formation of the multicenter consortium, bringing together researchers from multiple centers.  

Establishing the GASTRIC consortium had its challenges. The team opted for a decentralized approach, with each participating site obtaining its own IRB approval. Standardized data use agreements, especially with international sites, required careful negotiation and planning. Dr. Gilad prioritized data quality by developing a detailed instruction manual, conducting site training, and instituting regular audits. The CGA-IGC played a critical role in recruiting participating centers and fostering connections, highlighting the power of professional collaboration in moving research forward.

Today, the GASTRIC consortium is tackling several important research questions, including identifying predictors of invasive cancer development among CDH1 carriers, analyzing multi-center penetrance data across families, and assessing complication rates following prophylactic gastrectomy—a major surgery undertaken by otherwise healthy individuals to reduce cancer risk.

Looking ahead, Dr. Gilad envisions transforming the consortium's retrospective database into a prospective registry, enabling researchers to track outcomes over time and adapt to new discoveries in CDH1 research. The team is also collaborating with patient advocacy groups to ensure research priorities align with patient experiences and needs.

This episode offers valuable insights for clinicians, researchers, and anyone interested in hereditary cancer syndromes. It showcases the power of collaboration and the potential for building successful research consortiums to advance our understanding of complex genetic conditions like CDH1-related gastric cancer.

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If you enjoyed this podcast, you may like our first podcast, of the CGA-IGC Research Collaboration series- the LINEAGE Consortium, or others from the CGA-IGC Podcast Series (Seasons 3, 4, 5, 6 & 7) presented by the CGA-IGC Education Committee. Or, explore our Expert Approach to Hereditary Gastrointestinal Cancers podcast series (Seasons 1 and 2).

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