Successful launch of the Alpha-1-KIDS registry
In spring 2024, an app-based registry for children and adolescents with alpha-1 antitrypsin deficiency was launched. Families themselves submit their information to the registry. The development team from the University Hospital Bonn hopes this will result in the highest possible participation rate, as only sufficiently large datasets can provide helpful information about the disease.
To participate, the app can be downloaded from the App Store (alpha 1 kids). Alternatively, registration is also possible via a web version (alpha1kids.de). After an initial registration step, families will receive a QR code by mail, which they can then use to activate the app.
Children can be registered using an initial registration form. It is also possible to register multiple children. The length of the questionnaire adjusts depending on the severity of the illness. Of great importance to the team at the University Hospital Bonn are the progress reports, which can be completed whenever there is new information to report. Laboratory results can be photographed, uploaded, or entered manually. The data entered up to that point can then be displayed in a table or graph and saved or printed.
The purpose of this registry is to gain a better understanding of the disease, so that in the future it may be possible to identify earlier which patients are at high risk of developing a serious liver disease and which are not.
A better understanding of the natural course of the disease is of great importance! Please help and register your child in the Alpha1-KIDS registry.
Thank you.
If you have any questions, please contact us at alpha1kinderzentrum@ukbonn.de Please contact the team at the Alpha1 Children's Center in Bonn directly, which manages the registry.
