PatientCrossroads Leverages Patient Portals to Integrate Electronic Health Records (EHR) into its CONNECT Patient Registry Platform

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DuchenneConnect EHR integration supports important research goal.

Through patient-accessible online health portals, medical data previously out of reach in multiple EHRs can be collected, organized and maintained in patient registries

PatientCrossroads, a leading provider of patient registries, has announced that the DuchenneConnect registry, led by Parent Project Muscular Dystrophy (PPMD), will be the first patient report registry to directly integrate electronic health records (EHR) data via patient portals.

The new capability was developed through a partnership between PatientCrossroads and PPMD. EHR integration with the DuchenneConnect registry supports the goal of including EHR data in the patient-powered research networks (PPRNs) that are members of PCORnet, the National Patient-Centered Clinical Research Network. DuchenneConnect PPRN participates in PCORnet, supported by funds from the Patient-Centered Outcomes Research Institute (PCORI).

The integration of EHR data with patient registries has the potential to transform health research by consolidating research information into a data-rich platform that can be made available to a consortium of research organizations that use PCORnet’s resources.”, said Ann Lucas, MS, CGC, co-Principal Investigator (PI) of the DuchenneConnect PPRN.

Families will be able to connect their detailed medical records to the DuchenneConnect registry by entering their hospital system patient portal credentials into the DuchenneConnect registry. Medications, lab results and conditions will be automatically retrieved regularly and stored in DuchenneConnect.

“Many industries already pull data from multiple sources and make it available to consumers in ways that make their lives easier,” said Kyle Brown, founder of PatientCrossroads. “For instance, companies such as offer consumers a tool to aggregate their own data from financial services portals to provide a comprehensive financial view through a single site. Similarly, PatientCrossroads is providing a complete medical view of a patient by aggregating their patient portal data into a single system.”

EHR Integration to Enhance DuchenneConnect Effectiveness
With the new patient portal integration, PatientCrossroads registries such as DuchenneConnect will be able to provide a consolidated view of patients’ medical records from one or more health systems that combines medications, labs results, diagnoses, treatments and co-morbidities.

The Affordable Care Act spurred the availability of patient-accessible online health portals. According to a recent study from Athena health, 84 percent of U.S. patients want electronic access to their health records, including 83 percent of seniors. More than 100 million U.S. citizens have electronic access to their health records, and this number is expected to continue to grow rapidly.

“While patients have a legal right to their medical records, collecting and organizing records in a central location is challenging,” said Brown. “Through patient-accessible online health portals, medical data previously out of reach in multiple EHRs can be collected, organized and maintained in patient registries.”

According to Pat Furlong, founding president and CEO of Parent Project Muscular Dystrophy (PPMD): “In 2015 alone, the DuchenneConnect registry facilitated recruitment for nine research studies and eight clinical trials. In addition, DuchenneConnect data was provided multiple times for both industry feasibility studies and academic research. EHR integration would have helped coordinate these activities.”

PatientCrossroads also incorporates patient-provided information that never finds its way into electronic medical records, such as quality of life, family history and patient-reported outcomes. Collecting this type of information together with electronic medical records will provide the infrastructure to facilitate many different types of research. Similar efforts can support a platform for post-market surveillance for rare disease therapeutics—a capability expected to be in high demand from patient registries for other diseases and conditions, as well.

“DuchenneConnect has demonstrated how data provided by patients and their families can help improve understanding of Duchenne and Becker muscular dystrophy and speed the development of new treatments,” said Holly Peay, Ph.D., co-principal investigator (co-PI) for the DuchenneConnect PPRN. “At the same time, however, we have to ask a lot of our families in the process. We are excited to launch this new tool that pulls medical record data into the registry so that we can provide a useful medical record resource for families while at the same time providing greater value to researchers and drug developers.”

The PatientCrossroads patient registry platform provides a secure portal for patients to share data, while safeguarding privacy. The platform is used by NIH-funded patient registries and passes rigorous data security audits. Using the PatientCrossroads CONNECT registry platform, healthcare and research organizations can quickly collect large quantities of electronic health record data, on a regular basis, with patients’ full consent.

About Parent Project Muscular Dystrophy
Duchenne muscular dystrophy is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest, most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne. PPMD invests deeply in treatments for the current generation of people affected by Duchenne, as well as in research that will benefit future generations. The organization advocates in Washington, D.C., and has secured hundreds of millions of dollars in funding. By demanding optimal care, PPMD strengthens, unites and educates the global Duchenne community—helping people and their families affected by Duchenne. For more information, visit

About PCORnet
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at

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. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple disease to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit

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Kyle Brown
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