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

Newswise — NEW YORK, NY, SEPTEMBER 23, 2014 -- A newly formed consortium including experts from academic medical centers and commercial genetics laboratories across the country 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 Dana-Farber Cancer Institute, Mayo Clinic, Memorial Sloan Kettering Cancer Center (MSK), 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 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.

“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, 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. “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 E. Garber, MD, MPH, Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute.

In June, the first steps in the creation of PROMPT were achieved when commercial laboratories agreed to join in the effort and a contract with PatientCrossroads, a provider of Internet-based registry portals, was signed. 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 in September.

“The registry is designed in a flexible way that allows participants to choose how much personal information they provide,” said co-founder Mark Robson, MD, Clinic 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, 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,” said 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.

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, MD, MPH, 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.

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About Memorial Sloan Kettering Cancer CenterWe are the world’s oldest and largest private cancer center, home to more than 13,000 physicians, scientists, nurses, and staff united by a relentless dedication to conquering cancer. As an independent institution, we combine 130 years of research and clinical leadership with the freedom to provide highly individualized, exceptional care to each patient. And our always-evolving educational programs continue to train new leaders in the field, here and around the world. For more information, go to www.mskcc.org.

About Dana-Farber Cancer Institute Dana-Farber Cancer Institute, a principal teaching affiliate of Harvard Medical School, is world-renowned for its leadership in adult and pediatric cancer treatment and research. Designated as a comprehensive cancer center by the National Cancer Institute (NCI), it is one of the largest recipients among independent hospitals of NCI and National Institutes of Health grant funding. For more information, go to www.dana-farber.org.

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 http://newsnetwork.mayoclinic.org.

About Penn MedicinePenn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $4.3 billion enterprise.

The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 17 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $392 million awarded in the 2013 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania – recognized as one of the nation's top “Honor Roll” hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; Chester County Hospital; Penn Wissahickon Hospice; and Pennsylvania Hospital – the nation's first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2013, Penn Medicine provided $814 million to benefit our community.