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?
The global patient registry is managed by the AKU Society and collects data on the progression and prevalence of AKU across the world. This information will expand understanding of AKU and help advance 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.
MORE INFO
If you have any questions about the registry please read more here.