Patient Advocacy at NIH Registry/Repository meeting

Bethesda, MD – The ICF was present at the 2010 NIH Advancing Rare Disease Research meeting titled: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data.  ICF President Matthew Lewis joined ICF Director Dr. David Goldfarb (NYU, Saint Vincent’s Hospital) and research coordinator Frank Modersitzki to gather information and best practices to assist in the establishment of the new Cystinuria Registry effort led by Dr. Goldfarb.

Rare Kidney Stone Center Funded

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 … Read more