On October 5th, 2009, the National Institutes of Health (NIH) announced that they would be expanding the Rare Diseases Clinical Research Network, awarding $117 million among 19 new and existing consortia. The Consortium for Hereditary Causes of Nephrolithiasis and Kidney Failure (informally known as the Rare Kidney Stone Condortium) was among the new groups, and includes a direct focus on cystinuria research in the form of a patient registry and biospecimen repository. The success of this proposal marks a significant opportunity for cystinuria research advancement.
For more information, please read the recent announcement by Dr. David Goldfarb, lead coordinator of the Cystinuria Center. Additionally, please visit the ICF Cystinuria Channel at YouTube to see Dr. David Goldfarb discuss the value and need for a cystinuria registry at the ICF’s 2008 symposium in New York.
Both the International Cystinuria Foundation and the Cystinuria Support Network have been integrally involved as Patient Advocacy Groups (PAGs) supporting the Cystinuria Center effort.