$8.7M USD for world’s largest colorectal cancer registry

The Colon Cancer Family Registry helps researchers better understand the causes of colorectal cancer, improve clinical management and aid prevention efforts.

The international registry of colorectal cancer patients and relatives, supporting earlier diagnosis and research to improve patient outcomes, has received $8.7 million USD from the U.S. National Institutes of Health (NIH).

The University of Melbourne has received this additional five years’ funding for six sites in Australia, the USA and Canada for the Colon Cancer Family Registry (CCFR), the largest global cohort study of colorectal cancer causes and outcomes in the world, which will see the registry reach 30 years of operation in 2027.

The CCFR is managed by an international consortium of institutions, and supports work to better understand the causes of colorectal cancer, improve clinical management of the disease and aid prevention efforts.

Professor Mark Jenkins and Associate Professor Dan Buchanan of the University of Melbourne Centre for Cancer Research and the Melbourne School of Population and Global Health are principal investigators of the study and co-lead the Australian arm of the CCFR.

“Australia and New Zealand have the highest rates of bowel cancer in the world,” Professor Jenkins said.

“This funding is a huge win for long-term monitoring and understanding of the disease through multiple generations, with the ability to retrospectively take advantage of new technologies such as genomic sequencing.

“The project, which we have been involved with since 1997, has enabled valuable research across the spectrum of risk, diagnosis, prognosis, and quality of life.

“The registry made it possible for our research team to develop an online colorectal cancer risk predictor tool CRISP, which allows general practitioners to estimate a patient’s individual risk of developing colorectal cancer earlier, and with greater precision.”

Associate Professor Buchanan said: “Colorectal cancer is a disease that can affect multiple members of a family. The CCFR has enabled studies of genetic risk factors in families, leading the world in research on Lynch syndrome - the most common inherited cause of colorectal cancer -  and the identification and characterisation new genes that predispose people and families to colorectal cancer.”

The CCFR is currently undertaking a major research effort to uncover the reasons behind the growing number of colorectal cancer diagnoses in individuals under the age of 50. This new tranche of funding will help preserve the existing registry, recruit the next generation of participants, and allow researchers to characterise incidents of colorectal cancers around the world.

Professor Jenkins said researchers will also investigate the impact COVID-19 had on access to bowel cancer screening.

“We will be looking at whether COVID-19 has resulted in people avoiding screening, and determining if it has impacted people’s treatment for cancer diagnoses,” Professor Jenkins said.

The CCFR cohort includes approximately 37,400 participants, and their relatives - who are at increased risk of colorectal and other cancers - from almost 11,000 families from the USA, Canada, and Australia. The registry has been used for 500 research publications and 288 projects led by external investigators.