What is the AKU patient registry?
The patient registry is a global online database created to monitor the progression of AKU, evaluate current treatment and management of the condition, and track the prevalence of patients across the world. The registry will also help to contribute to our understanding of AKU and help us to accelerate our research into developing new treatments and potential cures for the condition.
Why should you join the AKU patient registry?
The AKU patient registry will allow us to collect a wealth of information on the disease. We will be able to track the prevalence of the condition around the world, evaluate the effectiveness of current treatments, and increase our understanding of how the condition develops. As an ultra-rare condition, the registry is an essential tool to advance our scientific research into developing new treatments and potential cures for the condition as the registry will provide us with a wealth of information on AKU to facilitate collaboration with researchers and pharmaceutical companies.
What information is being collected?
Information will be collected on the progression of the symptoms of AKU and your response to treatments.
The aims of the AKU patient registry are:
- Track the prevalence of AKU.
- Monitor the progression of AKU.
- Evaluate the effectiveness of current treatments
- Identify new hotspots of AKU.
- Create a database to accelerate our scientific research.
How does the AKU Patient Registry work?
If you choose to participate in the registry, when you receive treatment and management for your AKU your doctor (or another healthcare professional) will input you’re your AKUSSI scores and relevant information to your treatment to the registry. This will happen every time you receive a check-up allowing us to track the progression of AKU over time and evaluate the effectiveness of current treatment options.
What do we do with data?
The data will be used by the AKU Society to track the progression and prevalence of AKU. With this information, we will be able to improve the treatment and management of AKU while it will also allow us to accelerate our research into developing further treatments and potential cures.
Who has access to the information?
The data is managed by the AKU Society and the processes of handling and storing information are all fully GDPR compliant. The AKU Society may share information in collaboration with their research partners (e.g. universities and pharmaceutical companies). If this occurs, all information will be pseudonymised.
Do I have to participate?
No. The AKU patient registry is a consented registry meaning patients are only including if they choose to participate.
Can I change my mind?
Yes. If at any point you would like to halt your participation this can be done by contacting lesley@akusociety.org
Who is in charge of the information?
The AKU Patient Registry is managed by the AKU Society who will ensure that the registry is fully GDPR compliant.
How long will my data be kept?
The data in the registry will remain as long as the AKU Society continues to have the resources required to host and manage the registry.
Is my data stored securely?
Yes. The AKU Society ensures that all data is stored securely, and that the registry is fully GDPR compliant.
Where can I find more information if I still have questions?
More information on the AKU patient registry can be found on the AKU Society website here. If you have any questions or require any assistance, please contact lesley@akusociety.org.