Cystinuria.org website upgrade

Cystinuria.org is currently in the middle of a makeover for 2015, giving it an entirely new look.  More important, the new site is based on software that will facilitate the posting and maintenance of information and materials for learning.  Finally, a new hosting arrangement should ensure a more secure site than ever.  This is great news for the ICF’s online presence! Thank you for your patience with us during our site’s brief hiatus. The ICF is a volunteer-run organisation and updates can sometimes be slow.  However – we are working hard to deliver the latest generation of cystinuria.org as soon … Read more…

Cystone Study Concluded

Cystone

Today the results of a four year effort to test the potential effect of an herbal supplement on cystine stone burden were published in the Journal of Urological Research. The study, led by Dr. Stephen Erickson at the Mayo Clinic, evaluated the use of Cystone®, an herbal treatment that had been implicated in a case study in the reduction of stone formation. The results were reported to be negative, with neither a change in urinary composition nor a decrease in stone burden observed in patients receiving Cystone®. While the authors state that “A longer term study with more patients would … Read more…

The Rare Kidney Stone Consortium Announces the Cystinuria Registry

Rare Kidney Stone Consortium

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 … Read more…

2010 ICF Cystinuria Symposium Announced

2010 Cystinuria Symposium

The 4th Symposium of the International Cystinuria Foundation will be held on Saturday, July 10, 2010, at the NYU Langone Medical Center in New York City. Patients, families, physicians, and researchers are invited to attend. The biennial event is a forum for both disease education and community building. Join us to learn the latest advancements in cystinuria research, and discuss with others who are affected by the disease. Topics of discussion this year include advancements in clinical informatics, cystine crystallization studies, and research utilizing the cystinuric mouse model first discussed by Dr. Jay Tischfield in Chicago at the 2006 Cystinuria … Read more…

The ICF Launches Cystinuria.org v4.0

Today we are launching the newest edition of the ICF website, unofficially the 4th version since the site’s inception in 2002. It is our hope that the new site design will allow for improved development and publishing of cystinuria-related resources. Some content and features from the former site may be temporarily unavailable while we are still in the process of updating. We thank you for your patience in this transition period!

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…