The German ADPKD Tolvaptan Treatment Registry

To be part of this study, you need to be an adult, 18 years old or older, and have ADPKD. Your doctor must have confirmed that you have ADPKD, either because your family has a history of it and you have kidney cysts, or because they've diagnosed you.

Also, a key part of joining is your connection to tolvaptan. You should either be coming to the study center to see if tolvaptan is right for you, or your doctor has already decided you'll start taking it, or you've already begun treatment with tolvaptan.

You wouldn't be able to join if you're not able to understand and agree to take part, or if your kidneys have already reached a stage where you need dialysis or a kidney transplant. Also, if you're taking tolvaptan for a reason not officially approved (this is called "off-label use"), you wouldn't be included.

If you join this study, it won't require extra visits to your clinic. The researchers will collect information from your regular, yearly check-ups at your specialist clinic or from discussions with your local kidney doctor. This means your usual ADPKD care will continue as normal. The information gathered will include things like your age, height, weight, family history, and any other health conditions you have. They'll also look at your blood pressure, medications, and any kidney-related issues you've had in the past year, like infections or pain. In some cases, results from scans like MRI, which are routinely done for ADPKD management, might also be included. Your consent will be obtained before any information is shared.