ADPKD Registry

Patient registries are a critical component in the advancement of medical research, especially with rare diseases like Autosomal Dominant Polycystic Kidney Disease (ADPKD). That’s why the PKD Foundation has created the nation’s first network of individuals affected by ADPKD.

When you join the ADPKD Patient Registry, you’ll be doing your part to drive the next medical breakthrough. You’ll be providing valuable information about your family history, symptoms, diet, quality of life, etc. The Foundation will also help connect you to research studies and clinical trials.

The ADPKD Patient Registry collects patient data through a secure, web-based system that is easy to access and use from the comfort of your home or office. Anywhere you use a computer, tablet or smartphone. Researchers need to understand the full impact and progression of ADPKD, so the Registry collects a wide array of patient data at the time of registration and through surveys several times a year. You’ll be asked to provide:

• Historical information about your diagnosis, family history, symptoms and medication
• Kidney function lab tests, imaging scans and genetic test results
• Details about how PKD affects your work and daily life (such as pain and fatigue)
• You may choose to answer all, any or none of the survey questions and choose not to provide specific medical information
• The Registry is hosted on a secure platform that complies with HIPAA guidelines to protect your privacy and identity

As an individual with ADPKD, you are an expert in your own disease and have the power to advance research. The ADPKD Registry makes it easy to participate. Creating the ADPKD Patient Registry is a vital first step in powering a cure for this relentless disease. The next step is yours. Here’s how to join.

1. Create an online account
2. Agree to an informed consent
3. Complete the core questionnaire

For questions, contact: research@pkdcure.org