We are excited to announce the launch of our global AKU patient registry. Our registry will play a crucial role in increasing our understanding of AKU and driving research into potential treatments and cures.
Over the past year, we have been working with Dendrite Clinical Systems to design the world’s first global AKU patient registry.
The registry will allow us to collect information on the progression and prevalence of AKU across the world. With this data, we will be able to increase our understanding of AKU and streamline our research into developing potential treatments and cures. With AKU being so rare, collecting as much data as possible is critical for conducting thorough research studies and partnering with pharmaceutical companies to drive drug development forward.
The registry is open to all people diagnosed with AKU and your participation will be invaluable to our research into developing a cure for AKU. To participate, patients will be asked to complete an annual survey on your AKU. We will then be able to analyse this data year-on-year to track how AKU progresses in different people.
We have answered some common questions on the registry below, but you can find a comprehensive FAQ page on the registry here and can sign up to the registry here.
If you have any questions on the registry, please contact registry@akusociety.org
What is a patient registry?
Patient registries collect and store information about patients with a particular disease. They are essential tools to understand a condition and conduct research into developing treatments and cures.
What is the aim of our registry?
Our registry will allow us to track the prevalence and progression of AKU across the world. This will significantly increase our understanding of how AKU develops over time, identify new hotspots of the condition, accelerate our research into developing treatments and cures, and help us to work towards securing universal access to nitisinone treatment for all patients around the world.
What does joining the registry involve?
AKU patients participating in the registry will be asked to complete an annual survey which asks them to answer a number of questions around their AKU, any treatments they have used, and what symptoms they are experiencing. Comparing this data year-on-year will allow us to track how AKU progresses in different people and across populations
Why should I join the registry?
By participating in the registry, you will provide a key role in advancing our medical research into understanding AKU and developing potential treatments and cures for the condition. The rarity of the condition means that collecting as much data as possible about the impact and prevalence of AKU is vital to conducting successful research and engaging with pharmaceutical companies to bring potential drugs to market.
Any other questions?
Check out our FAQ page here which provides more information on our registry, or contact registry@akusociety.org with any specific questions.