A newly formed consortium with experts from academic medical centers and commercial genetics laboratories across the country, has established the “Prospective Registry of Multi-Plex Testing” (PROMPT) www.promptstudy.org. This online registry is available to individuals and families who have undergone testing for inherited cancer-causing genetic mutations.
The registry was co-founded by Dana-Farber Cancer Institute www.dana-farber.org, Mayo Clinic, www.mayoclinic.org Memorial Sloan Kettering Cancer Center (MSK) www.mskcc.org, and Penn Medicine www.pennmedicine.org. The goal for the registry is to provide data to improve the understanding of the level of risk associated with and outcomes following testing for panels of cancer-associated genes.
Co-founder Susan Domchek, Director of the Basser Research Center for BRCA at the University of Pennsylvania’s Abramson Cancer Center www.penncancer.org said, “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 be able to design more effective studies in the future.”
According to Kenneth Offit, MD, Chief of the Clinical Genetics Service at MSK, and a Co-Founder of PROMPT www.mskcc.org/cancer-care/doctor/Kenneth-offit “Initial funding will come from the Robert and Kate Niehaus Initiative in Clinical Cancer Genetics and the Breast Cancer Research Foundation. We are confident this study will generate funding from other granting agencies.”
In June, the first steps taken to create PROMPT were achieved when commercial laboratories joined in the effort and contracted with PatientCrossroads https://patientcrossroads.com, a provider of internet-based registry portals. The first phase of the project will unit individuals with families who have consented to participate in studies examining cancer causing genetic mutations.
Ambry Genetics www.ambrygen.com, Gene Dx www.genedx.com Myriad Genetics www.myriad.com, and Quest Diagnostics www.questdiagnostics.com have agreed to provide information on the registry site to patients and healthcare providers.
The consortium reached key milestones during the summer with the completion of the patient online portal in July and received approval in August to begin enrolling patients in the first phase of the study.
The second phase of the study to begin later in 2014, will collect more clinical details, outcomes assessments, and characterize individual gene variants in families. “One of our major goals is to ultimately 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 www.mayoclinic.org/departments-centers/laboratory-medicine-pathology/overview.