Academic-Industry Partnership Develops New Online Registry for Patients Tested for Inherited Cancer Risk

Academic medical centers and commercial genetics laboratories across the country have joined forces to establish 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.

Dana-Farber Cancer Institute, Mayo Clinic, Memorial Sloan Kettering Cancer Center (MSK), and Penn Medicine have co-founded the registry to help provide data that is vital to improving the understanding of the level of risk associated with and outcomes following testing for “panels” of cancer-associated genes.

“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,” co-founder, Susan Domchek, MD, Director of the Basser Research Center for BRCA in the University of Pennsylvania’s Abramson Cancer Center, and the Basser Professor of Oncology at the Perelman School of Medicine at the University of Pennsylvania said in a statement. “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.”

The consortium reached key milestones during the summer, with the completion of the patient online portal in July and ethical approval in August to begin enrolling patients in the first phase of the study.

“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,” Judy E. Garber, MD, MPH, Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute said in a statement.

The first phase of the project will involve the creation of a cohort of individuals and families who have consented to participate in studies examining cancer-causing genetic mutations. Ambry Genetics, Gene Dx, Myriad Genetics, and Quest Diagnostics indicated their agreement to provide information about the PROMPT registry site to patients and healthcare providers receiving panel test results. Leaders of each of these laboratories have expressed a strong commitment to the scientific objectives of the project. The first phase of the study received Institutional Review Board approval in mid-August, with accrual of participants to begin this month.

“The registry is designed in a flexible way that allows participants to choose how much personal information they provide,” co-founder Mark Robson, MD, Clinic Director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center said in a statement. “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 will begin later this year. This study will entail 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,” Fergus Couch, PhD, study co-founder and Chair of the Division of Experimental Pathology in the Department of Laboratory Medicine and Pathology at Mayo Clinic said in a statement .