PatientCrossroads Lauches a New Open Patient Registry

March 10, 2013

In honor of today’s Rare Disease Day, PatientCrossroads has issued an invitation to rare disease organizations, including patient advocacy groups, pharmaceutical companies and medical researchers, to become Registry Partners in a new shared, open patient registry.

There is no charge to become a Registry Partner, and there are only minimum requirements to participate. Having an easily accessible patient registry empowers everyone involved in diagnosing, researching, treating and living with rare diseases.

With generous support from Novartis Pharmaceuticals Corporation (NPC), PatientCrossroads will announce the selected organizations and launch CONNECT, an open patient registry, worldwide in April 2013. After the initial beta period, the program will be made widely available in the hopes of better understanding medical history data.

“As the leading independent provider of patient opt-in registries, PatientCrossroads is uniquely positioned to provide a secure, economical and consistent method to collect data on many diseases in a single registry,” said Kyle Brown, founder of PatientCrossroads. “PatientCrossroads was established on the values recently echoed by the EURORDIS-NORD-CORD Joint Declaration of 10 Key Principles for Rare Disease Patient Registries, and our new program amplifies our long-standing support for these principles. With the generous support of NPC, we look forward to launching the open-access registry to help identify and quantify rare diseases.”

“Sponsoring the PatientCrossroads open-access patient registry program reinforces Novartis’ commitment to patients,” said Dr. John Orloff, senior vice president and chief medical officer at NPC, an affiliate of Novartis AG, a global healthcare company that provides innovative healthcare solutions that address the evolving needs of patients and societies. “This innovative program ensures open access to patient-provided medical history that is critical in understanding disease progression and, ultimately, in identifying clinical trial participants that can accelerate treatments.”

How the New Open-Access Patient Registry Works

The open-access registry is a full-fledged version of PatientCrossroads’ registry platform. This proven technology was selected to power the NIH Global Rare Diseases Registry program and the NICHD Down Syndrome registry, and it is in use by numerous disease advocacy, research and academic organizations worldwide.

PatientCrossroads will operate the registry and serve as the custodian of the data, ensuring that everyone has equal and equitable access to this valuable patient information. PatientCrossroads safeguards the privacy of patients by acting as the trusted gatekeeper of patient contact and privacy preferences. Geisinger Health System will explore the role for their Institutional Review Board to provide oversight and ensure patients are protected.

“As with our foundation-sponsored registries, the new open-access registry model means that patients retain ownership of their medical data and control over whether they opt in or out of sharing their information for research,” said Brown. “We are very grateful to patients for allowing us the privilege to use their de-identified data to further research, and PatientCrossroads’ number-one priority is to honor their trust.”

How to Apply to Become a Registry Partner

Organizations interested in becoming Registry Partners can learn more and complete a short online application form at

PatientCrossroads provides registry systems that connect disease communities with scientists studying those conditions. Offering software, technology, management and data curation services, PatientCrossroads registries collect data on more than 250 rare diseases and power the NIH’s Global Rare Diseases Registry (GRDR) and the NIH NICHD Down Syndrome registry. PatientCrossroads is a full partner in Europe’s RD-Connect platform ensuring global, open access to patient-provided medical histories. For more information, visit or contact Kyle Brown: [email protected] or (650) 678-8929.

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