How many people have Primary Hyperoxaluria (PH)? What kind of symptoms will I develop and when? How can I improve my health and keep my kidneys healthy?
These are very straightforward questions, but there is not sufficient information to accurately answer them at the moment. This is where becoming a part of the registry can make a big impact – your information is so powerful, particularly in a rare disease.
The Primary Hyperoxaluria Registry is a patient database where such information is brought together, analyzed and used to advance our understanding of the disease. The Registry has the ability to track a patient’s health over a period of years and decades to help accurately answer the questions above.
Because PH is a rare disease, even nephrologists and urologists who specialize in kidney diseases are likely to see only a very small number of patients over the course of their entire career. That makes it very difficult to learn about how oxalate affects patient’s kidneys and other body systems, and difficult to determine what treatments are effective. However, when doctors and patients share their experiences with PH and combine it with information from around the world, knowledge can advance much more rapidly.
Participation in The Registry Makes it Possible to
- provide the best possible care to patients affected by PH
- improve methods in studying our disease
- achieve deeper understanding of PH and its causes
- find new treatments
- create new studies
- improve kidney function
Ultimately, the registry holds the key to unlock information desperately needed to develop new medical treatments and a cure for PH.
If you would like to join the registry please fill in the form below.