We have the opportunity to stop Dent disease from ever going to the next generation.
What is Data Collection?
Data collection is a process to collect information about you and your Dent experience. You have control over your information; you choose who has access to your information, you choose who sees what, and the settings are in your control, able to be changed at any time. Your data may be analyzed by doctors, researchers or drug developers who can use it to get to a faster diagnosis or to better understand Dent disease and how to potentially treat or cure it.
Why Should I Join?
Having all of our Dent data in one place means that information can be shared and analyzed by doctors, researchers, or drug developers who can use it to get to a faster diagnosis, or to better understand Dent disease and how to potentially treat or cure it. Additionally, we can help other kidney disease patients by sharing our data with researchers looking at overall kidney health. Our volunteers will not have access to your private medical information.
What is the Data Collection Program Used For?
Short term, the Data Collection Program supports diagnosis, drug discovery, and development. It increases Dent’s visibility as a rare disease and supports other diseases that are also seeking their cure.
Long term, the Data Collection Program will provide important information on specific body systems that may also be impacted by Dent disease over time. This will help others to recognize and treat symptoms which will aid in delaying future chronic problems.