PatientCrossroads Fuels Development of New National Clinical Research Network

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Three patient registries utilizing the PatientCrossroads platform receive PCORI funding to help establish PCORnet to support faster, more efficient clinical research.

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PatientCrossroads’ vision aligns perfectly with PCORnet, which is intended to provide patients, families and healthcare providers with key information required to make crucial decisions

PatientCrossroads, pioneer of the groundbreaking CONNECT patient registry platform, announced that three PatientCrossroads-based patient registries—DuchenneConnect, for Duchenne and Becker muscular dystrophies; the Phelan-McDermid Syndrome International Registry; and the NephCure Kidney Network, for primary Nephrotic Syndrome—have been awarded contracts by the Patient-Centered Outcomes Research Institute (PCORI) as part of the creation of a new health data network called PCORnet: the National Patient-Centered Clinical Research Network.

PCORI has invested more than $100 million to support 29 individual health data networks that will comprise PCORnet, a large, national network for conducting more efficient clinical outcomes research that addresses questions of greatest concern to patients and those who care for them.

“PatientCrossroads’ vision aligns perfectly with PCORnet, which is intended to provide patients, families and healthcare providers with key information required to make crucial decisions about which preventive, diagnostic or treatment approach is best suited to patients’ needs and circumstances,” said Kyle Brown, founder of PatientCrossroads. “Our three clients funded to help make PCORnet a reality are all leveraging PatientCrossroads-based registries to meet the goals of their proposals.”

DuchenneConnect, a program of Parent Project Muscular Dystrophy (PPMD), has been awarded $970,000 by PCORI. DuchenneConnect is an established patient-report registry with seven years of experience collecting longitudinal patient-reported data that is used by industry, clinical and academic researchers working on advances in the rare diseases of Duchenne and Becker muscular dystrophy.

“DuchenneConnect has become a model for rare-disease registries, and we look forward to the benefits for our community, and for the nation, from PCORI’s PCORnet effort,” said Holly Peay, vice president of education and outreach for PPMD and DuchenneConnect Principal Investigator, “Many of DuchenneConnect’s achievements through this program will become available to other disease registries under the PatientCrossroads model, thereby extending the reach of PCORnet to a broader range of patient networks.

The Phelan-McDermid Syndrome Foundation will establish the Phelan-McDermid Syndrome Data Network (PMS_DN) in partnership with researchers at Harvard Medical School’s Center for Biomedical Informatics. Their $950,000 award from PCORI will expand the utility of the existing patient registry by integrating family-reported information with concepts generated from electronic health records of patients affected by Phelan-McDermid Syndrome, in addition to other medical reports, in a unified data system. The PMS_DN will enable researcher access to de-identified family information in a way that supports never-before available hypothesis generation and testing for Phelan-McDermid Syndrome and expedites research into meaningful health outcomes for the Phlelan-McDermid Syndrome community.

“Involvement in PCORnet as a Patient-Powered Research Network has provided our Foundation an unprecedented platform to enrich data about our patient population and critical new collaborations in the promotion of patient and family leadership in research,” said Megan O’Boyle, Principal Investigator for the PMS_DN at the Phelan-McDermid Syndrome Foundation. “With PCORI and our partners at Harvard Medical School, we will elevate the value of patient and family reported data by weaving it together with clinical and genomics data to advance a ‘whole person, whole family, whole community’ research agenda for Phelan-McDermid Syndrome and we expect, related conditions.”

The NephCure Kidney Network, a Patient-Powered Research Network co-developed by Arbor Research, the University of Michigan and the NephCure Foundation, received nearly $650,000 from PCORI. The NephCure Foundation is the only organization committed exclusively to supporting research and seeking the cause of the potentially debilitating kidney diseases collectively known as Primary Nephrotic Syndrome (NS), which includes Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD) and Membranous Nephropathy (MN). The NephCure Kidney Network will enable important clinical and patient-reported data on NS to be contributed, under patient control, to a centralized repository.

“As a secure data network, PCORnet is designed to provide access to a large amount of diverse and relevant health information that can focus research on questions and outcomes especially useful to patients and those who care for them,” said Marilyn Hailperin, Research Director for the NephCure Foundation. “PCORI’s support will enable us to expand and enhance our NephCure Kidney Network to facilitate the rapid development and execution of comparative effectiveness research to benefit patents with Primary Nephrotic Syndrome.”

About PatientCrossroads

Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. For more information, visit

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Kyle Brown
since: 11/2011
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