Frequently Asked Questions:

By participating in the Scientific Registry, you drive HAE research forward. As an active member of the Registry, you will have exclusive access to new HAE research news.
All Registry members receive access to the Advance HAE online portal and digital app. These platforms help you track your health stats and generate personalized infographics on your health over time based on the data you provide. You will have the chance to become personally involved in the world of HAE research, resolving the remaining scientific mysteries of HAE and helping to accelerate the advancement of future therapies.
You can still be part of the Advance HAE Scientific Registry no matter how long it has been. Visit the Advance HAE portal to update your personal information or contact a Registry staff member for assistance.
If your blood sample has already been collected, no new sample is necessary. A blood sample does provide researchers with valuable information, but it only paints a partial picture. Even if you already submitted a blood sample, completing Quarterly and Attack Event reports on a regular basis is key to providing critical information to researchers that is needed to conduct HAE studies.
The Advance HAE Scientific Registry is a confidential database created to obtain uniform, long-term, complete and accurate information about how you live with HAE. That means we collect one small blood sample as well as quarterly written reports on an ongoing basis directly from HAE patients and blood relatives. The Registry de-identifies your information so that your participation is confidential and anonymous. Finally, we organize and make all the de-identified data available to researchers interested in studying HAE.
When you first register, we’ll provide you with a Past Medical History and General Medical History form, which must only be completed once. These provide the basic information for understanding your experience with HAE. We issue a Quarterly report once every 3 months. Submitting these reports is integral to gaining a complete picture of your life with HAE. Whether or not you experience an attack in a given Quarter, we ask that you access an Attack Event Report on the portal so we can keep track of your condition.
Scientific Registry members must be diagnosed with HAE or be a blood relative of someone who has HAE in order to participate.
Absolutely. If you have a blood relative with HAE, you are eligible to participate in the Scientific Registry.
Research findings can be found in peer-reviewed medical journals as they are published.