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The Rare Kidney Stone Consortium Announces the Cystinuria Registry

Date : 23 October 2010

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The Rare Kidney Stone Consortium Announces the Cystinuria Registry

Your participation is essential to the improved understanding of this lifelong disease and in the development of new treatment options.

The Rare Kidney Stone Consortium has opened enrollment for the Cystinuria Registry at New York University. In this registry, patients with cystinuria will be enrolled and information collected about their condition annually. The collected data in this registry will help provide a better understanding of the condition. The goal of this registry is to collect data about this rare disease, that may help to develop better treatment protocols in the future.

The privacy and confidentiality of all information collected in this registry is protected and will be used for research purposes only.

This registry is part of the Rare Kidney Stone Consortium, which in turn is part of the Rare Disease Clinical Research Network. This research is sponsored by the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) and the Office of Rare Disease Research (ORDR). The registry was developed in conjunction with several academic institutions and leaders in kidney stone researchworldwide. At NYU, the registry is under the supervision of Dr David Goldfarb and his team.

If you are interested in joining the registry, please visit the official NYU registry page for further information. If you have any questions or concerns, please feel free to contact the team at cystinuria@nyumc.org.

http://medicine.med.nyu.edu/nephrology/research/current/join+the+cystinuria+registry