The OHF Hyperoxaluria Registry
Launched in 2003, the Primary Hyperoxaluria (PH) Registry was the first of its kind. The PH Registry stores information on health and family histories, as well as samples in our biobank. This allows our researchers to conduct genetic testing and other analysis, to compile information from a large group of people in the PH community and better understand how a disease behaves, study what therapies have worked in the past, and develop new treatments. Our goal is to bring together patient data from around the world to better understand the course of disease so that patient care and treatments can be improved. Your data matters, and this is an opportunity to impact research and drug development, but we want to know more about what you want from the registry. Moreover, we hope to develop a similar resource for research in Enteric Hyperoxaluria and want to know more about your priorities for this initiative. All responses will be confidential.