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?
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.
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.