International Registry for Hereditary Calcium Stone Diseases
Primary Hyperoxaluria and Dent's Disease are both rare genetic disorders that can cause kidney stones, nephrocalcinosis, end stage renal failure, and death. Due to their low incidence in the general population, the experience of most physicians and medical centers is relatively limited, and research to improve patient's lives is difficult.
The purpose of this registry is to identify worldwide as many affected individuals as possible, and to collect as much clinical information about these patients as is feasible. The resulting collection of data will be much larger than any individual center could hope to accumulate, and will be available to all interested physicians and researchers internationally.
Goals of the registry are to increase understanding about these rare disorders, to provide evidence that can be used to establish patient care guidelines, and to provide the basis for future clinical trials. Participation in the registry is voluntary and at the discretion of patients and their care providers. All information regarding individuals will be carefully protected in an anonymous fashion in accordance with Mayo Clinic, United States, and international guidelines.
REGISTRY MISSION STATEMENT
The International Registry for Calcium Stone Diseases is a vehicle through which the international scientific community can pool information regarding these rare diseases, in order to collectively advance knowledge, and ultimately improve the quality of life of affected individuals and their families.
REGISTRATION FOR PHYSICIANS WISHING TO PARTICIPATE
Thank you for considering participation in the Primary Hyperoxaluria/Dent's Disease Registry. Your participation is very important for building a database of information to assist in developing therapeutic strategies for Primary Hyperoxaluria. It will help to outline more about disease expression, and also about diagnosis, therapy, transplantation procedures and outcomes. A study coordinator is available to answer questions or help in any way with data entry. To contact the study coordinator please call Julie Olson at (800) 270-4637 or email to email@example.com
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