Why Should You Join?

PKD patients like you are experts in your own experience.

The ADPKD Registry is patient-powered and patient-directed. By answering questions about your health and linking your provider health records, you’re helping us create a key resource with a ripple effect to improve outcomes for PKD as well as access to new therapies.

When you share your story, we all benefit.

The ADPKD Registry is the first North American database of patients with ADPKD and one of the first registries to integrate provider health records.

With your help, we can collect important clinical data and learn about your patient journey. We want to know how this disease has affected you and your family, and how treatment options can be improved.

When we band together, we can be seen and heard.

You’re not alone. There are an estimated 600,000 Americans with ADPKD, but never before has there been a nationwide resource connecting PKD researchers with people interested in being part of their research.

By joining the ADPKD Registry, we’ll help identify studies you may be eligible for and share information on how to participate.

With enough members, drug companies will take notice.

Joining the ADPKD Registry involves three easy steps:

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

You can join the Registry from the comfort of your own home on your computer, tablet or mobile phone.

The Registry is hosted on a secure platform following comprehensive measures to protect your information.