Marco Castiglioni from HAE Italy gives a perspective of the first year with the HAE Global Registry:
All patients affected by HAE and enrolled in the Italian voluntary association for HAE and other rare forms (A.A.e.e – Onlus) have access to their own online diary and to the global registry for HAE patients. To have this access, the patients must contact their referring physicians and fill in informed consent.
This project started in Italy in the middle of February 2018 thanks to all doctors and supported by the voluntary association of patients. From the start, 245 diaries have been activated, and for these patients, 896 attacks have been added by app and web.
The feedback from the patients is very good. The most important points that we found out are:
- Fast insertion of the attacks
- App on smartphone or by web
- Automatically saved in an “ i-tech cloud”
- Quality of data (all the new attacks must be approved by the referring physician to conserve a high quality of system)
- Quick knowledge of how to use the app
- It allows an own evaluation of the course of the disease during the time
All of these points can help the patient to control herself or himself and also these data can be very useful for research for new medications, for a better evaluation of the current medication and profilaxys.
It is not easy to get people involved in this project. Not all the patients in Italy know about the registry because it is not easy to reach everyone. For this reason, we are trying to increase the communication, organizing meetings, sponsoring in the webpage and the social media.
As I heard a few times during conferences and meetings, this registry works best if there are a lot of data inside – like a million with a swollen river. But who can give this data? That is us – all the patients! We are the power, and we have to help because it is our cause. If a lot of people join we can have more data to work with – and that will help us all.
