AKU Global Patient Registry

If you have been diagnosed with AKU anywhere in the world, you can make an important contribution to our research into understanding, treating, and curing the condition.   

What is the AKU patient registry?

Our global patient registry collects data on the progression and prevalence of AKU across the world. This information will expand our understanding of AKU and allow us to advance our research into developing new treatments and cures for AKU.

How does the AKU patient registry work?

You will be asked to fill out a detailed questionnaire when joining the registry and you will then be asked to complete shorter follow up questionnaires every year which track the progression and management of your AKU over time.

What do we do with the data?

The AKU Society will use the registry to track the progression and prevalence of AKU. This will allow us to further our understanding of AKU, improve our research, and help us achieve universal access to nitisinone.

If you have any questions about our registry please contact registry@akusociety.org or read the FAQs below.

We have developed a video guide to walk you through the process of registring and entering data into the registry