Duke Clinical Research Institute and SAS open heart-disease data to researchers
Access to decades of patient data on America’s deadliest disease can lead to new treatments
A new collaboration will give more researchers access to the largest and oldest cardiovascular database in the world. The Duke Clinical Research Institute (DCRI) and analytics leader SAS will provide researchers worldwide with data management and analytics tools to explore 45 years of cardiovascular patient data collected by the Duke University Health System.
The DCRI and SAS share the goal of greater transparency and openness in research to improve patient care to find new ways to treat heart disease, the leading cause of death in the United States. For the DCRI, the collaboration represents a significant milestone for its broader data access initiative, Supporting Open Access for Researchers (SOAR).
“Open science is good for researchers, good for innovation, and good for patients and the public,” said DCRI Executive Director Eric Peterson, MD, MPH. “The question at the center of the open-science discussion is not whether data should be shared, but how we can usher in responsible methods for doing so. Our collaboration with SAS will allow data to be shared for the advancement of public health worldwide.”
Michael Pencina, PhD, Director of Biostatistics at the DCRI commented, “While many support open science in theory, to date, few academics have been willing to actually share their own data. This is among the first examples where academic leaders are actually opening their clinical research data to others. This initiative provides a prototype for the field and is an incredibly important step toward greater data access for researchers everywhere.”
The cardiovascular data set is part of the Duke Databank for Cardiovascular Disease (DDCD). The databank includes de-identified records for patients treated at Duke between 1969 and 2013, and data from more than 100,000 procedures on more than 50,000 unique patients. The data includes patient demographics, cardiac medical history, other conditions occurring simultaneously (comorbidity), final impressions and subsequent treatments. This information is used to test clinical hypotheses, develop clinical trial protocols and help researchers assess long-term outcomes and assess time trends.
The SAS and DCRI project is the latest example of how organizations are using SAS® Analytics to improve patient care. “SAS has worked for decades to bring data and researchers together to accelerate medical research,” said Matt Gross, Director of the SAS Health Care and Life Sciences Global Practice. “SAS provides the environment and analytics to spur advances in cancer research through the Project Data Sphere initiative. The company also promotes new medical research through its work with the pharmaceutical industry to share clinical trial data from nearly 600 studies with researchers around the world. This new collaboration with the DCRI will foster more clinical research and data sharing, with the aim of improving people’s health today and tomorrow.”
The DCRI and SAS are constructing a data governance plan to ensure the reliability of the data sets and to process requests as efficiently as possible. Researchers can apply for access to the data sets at soar.dcri.org.
About Supporting Open Access for Researchers (SOAR)
SOAR (Supporting Open Access for Researchers) aims to facilitate open sharing of clinical trial data with responsible researchers to promote open science and allow investigators to verify trial results as well as pursue interesting secondary uses of trial data. Ultimately, this increase in transparency can inform science and improve patient care.
About the Duke Clinical Research Institute
The DCRI is the largest academic research organization in the world, with a mission to develop and share knowledge that improves the care of patients through innovative clinical research. The DCRI conducts groundbreaking multinational clinical trials, manages major national patient registries and performs landmark outcomes research. DCRI research spans multiple disciplines, from pediatrics to geriatrics, primary care to subspecialty medicine, and genomics to proteomics. The DCRI also is home to the Duke Databank for Cardiovascular Diseases, the largest and oldest institutional cardiovascular database in the world, which continues to inform clinical decision making more than 45 years after its founding.
About SAS® for Health Analytics
SAS for health analytics helps determine the best decisions for both patients and health care organizations, improving health while better managing costs. Through modeling, optimization, predictive analytics and business intelligence, health and life sciences organizations can strengthen financial performance, deepen consumer relationships and improve health care outcomes.
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