Kidney Cancer Association Open-Access Patient Registry Goes Live

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Founding Registry Partners voice strong support for the shared, open-access registry able to collect data on any disease, from rare to common.

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We expect CONNECT to put the Kidney Cancer Association and its 70,000 members on the cutting edge of participatory medicine.

The Kidney Cancer Association (KCA) and PatientCrossroads announce the CONNECT Open-Access patient registry is now live and available for patient communities and disease organizations – including patient advocacy groups, pharmaceutical companies, and medical researchers. Founding Registry Partner organizations, representing nearly 70 diseases, have already beta tested and provided input on the CONNECT registry and have expressed their strong support for the freely available patient registry program.

“The founding members of CONNECT represent a new breed of advocacy groups committed to collecting and sharing patient data openly, for the benefit of the entire disease community,” says Kyle Brown, founder of PatientCrossroads. “CONNECT is changing the way patient-provided medical history is collected and shared. This approach not only raises the general awareness of specific diseases, it also makes pan-disease patient-provided data broadly available to researchers and pharmaceutical companies to speed their progress toward greater understanding of diseases and new treatment options."

Bill Bro, KCA chief executive officer says, “We expect CONNECT to put the Kidney Cancer Association and its 70,000 members on the cutting edge of participatory medicine.”

The kidney cancer CONNECT registry may be accessed online at http://www.BigRegistry.org and from the KCA website, where more information about the disease, its diagnosis and treatment, is available.

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Carrie Konosky
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