The Challenges of Developing Registries for Small Patient Advocacy Groups

rarediseasereport
Published Online: Thursday, Apr 18, 2013

 

PatientCrossroads is a for profit organization that helps disease organizations -- be they patient advocacy groups, pharmaceutical companies, or medical researchers -- to become Registry Partners in a new shared, open-access patient registry able to collect data on any disease, from the most rare to more common diseases.

PatientCrossroads' strong roots in the rare disease community have helped numerous diseases create registries that can be used interchangeably by others to ensure the data is of use to all parties.

In this exclusive interview with Rare Disease Report, the CEO of PatientCrossroads, Kyle Brown talks about some of the challenges that rare disease advocacy groups have in developing registries and how programs like CONNECT - a collaboration between PatientCrossroads and Novartis – can help smaller patient groups share their information

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