• By Joe Dangor

Mayo Founding Partner in Online Patient Registry for Inherited Cancer Risk

September 23, 2014

three generations of women

Rochester, Minn. – Mayo Clinic announced today that it is part of a newly formed consortium, including experts from academic medical centers and commercial genetics laboratories across the country, that has established the Prospective Registry of Multi-Plex Testing (PROMPT), an online registry for individuals and families who have undergone testing for inherited cancer-causing genetic mutations.

Co-founded by Mayo Clinic Cancer Center, Memorial Sloan Kettering Cancer Center (MSK), Dana-Farber Cancer Institute and Penn Medicine, the goal of the registry is to provide data vital to improving our understanding of the level of risk associated with and outcomes following testing for “panels” of cancer-associated genes. The consortium is now enrolling patients in the first phase of the study.

“An enormous challenge in the practice of medicine today is that posed by panel testing of dozens of cancer genes, some of which are recently discovered and for which we do not have adequate information to guide preventive strategies,” said co-founder, Susan Domchek, M.D., director of the Basser Research Center for BRCA at the University of Pennsylvania’s Abramson Cancer Center.

Joe Dangor, Mayo Clinic Public Affairs, 507-284-5005, 
“Creating a database where patient information is gathered in one place will allow research teams across the country to take a more cohesive look at the risks associated with newly discovered genes, and design more effective studies in the future.”

“PROMPT provides an exciting and novel way for individuals, families, researchers and laboratories to work together to accelerate the accumulation of data needed to guide clinical decisions for people who have been and will be found to carry mutations in these less commonly altered cancer genes,” said Judy Garber, M.D., M.P.H., director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute.

“The registry is designed in a flexible way that allows participants to choose how much personal information they provide,” said co-founder Mark Robson, M.D., director of the clinical genetics service at MSK. “By participating in the study, even anonymously, families and individuals will increase the knowledge base not only for themselves, but also for future generations who may be at risk for these same genetic factors.”

The second phase of the study, to begin later this year, involves the collection of more clinical details, outcomes assessment, and characterization of individual gene variants in families. “One of our major goals is ultimately to understand the significance of the many variations in these genes that we are seeing across populations,” said Fergus Couch, Ph.D., study co-founder and chair of the division of experimental pathology in the department of laboratory medicine and pathology at Mayo Clinic.

Individuals will be able to gain access to the PROMPT site in several ways, including through crowd sourcing, web browsing, and direct referral from participating commercial testing labs. Information about the project is at www.promptstudy.org.

Senior researchers at the National Cancer Institute will participate in scientific design and data analysis.

According to Kenneth Offit, M.D., M.P.H., chief of the clinical genetics service at MSK and a co-founder of the effort, PROMPT will receive initial funding through ongoing support from the Robert and Kate Niehaus Initiative in Clinical Cancer Genetics, centered at MSK, and the Breast Cancer Research Foundation.

“We are confident this study will generate funding from other granting agencies, and believe it will provide a model for global efforts under way to incorporate new genetic discoveries into the management of individuals and families at risk for cancer and other diseases,” he said.


About Mayo Clinic Cancer Center
As a leading institution funded by the National Cancer Institute, Mayo Clinic Cancer Center conducts basic, clinical and population science research, translating discoveries into improved methods for prevention, diagnosis, prognosis and therapy. For information on cancer clinical trials, call 1-855-776-0015 toll-free.


About Mayo Clinic

Mayo Clinic is a nonprofit organization committed to medical research and education, and providing expert, whole-person care to everyone who needs healing. For more information, visit www.mayoclinic.org/about-mayo-clinic or https://newsnetwork.mayoclinic.org.