The ADVANCE HAE Scientific Registry is a nationwide research project driven by you and your fellow HAE community members. The registry is a tool for you to track and submit information about your HAE attacks, symptoms, and therapies.
Why is it Important?
Since HAE is a rare disease with a small patient population, collecting data from the community is critical to advancing research and furthering our understanding of the disease. The data you provide is the driving force behind new HAE research and discoveries. Everything you enter into the registry is confidential and plays a critical role in helping researchers resolve the remaining mysteries of HAE and accelerate the advancement of future therapies. To become a member, follow the steps below.
How to Join
Tell us about yourself. Complete the online registration form and share your information.
Give us permission to collect your blood sample and data. Fill out an online consent form for collecting your medical records, history, attack reports and blood sample. You will receive a blood sample donation kit with detailed instructions and a pre-paid return envelope directly from the Scientific Registry.
Discover with us. Once you join the registry, you will gain direct access to the Scientific Registry online portal. You can use the portal as your digital diary to submit your attack reports on a regular basis. The materials and data you provide will help HAE researchers, and also track changes in your health over time.
Download the ADVANCE HAE mobile app. The ADVANCE HAE app allows you to enter and monitor your reports from anywhere, at any time, with your digital diary available in the palm of your hand. Every report you complete helps move HAE research forward.
This free app was created by the HAEA just for our patient community, and makes it quick and easy to track your HAE attacks and therapies in a user-friendly format. Create your own personal record of everyday life with HAE, and transform your data into easy-to-read visual graphs. The app is available for iPhone and Android.
Watch this video to hear what Dr. Sandra Christiansen has to say about the HAEA Scientific Registry
After four years in a clinical trial I just wasn’t mentally or emotionally ready to have more blood work done and complete more forms by joining the Scientific Registry. I held firm for some time. But, then I realized how selfish I was! I joined the Scientific Registry so that I could not only help myself but the rest of my HAE family. I was sent a kit, went to my health provider’s lab, sent it back and I’ve been a part of this amazing process since. Own it, do it, because it benefits us all.
I have a need to see a generation without this disease. I’m ready to participate in any advances in HAE research. Giving Blood and my information for research into this disease is the future for solving and answering the “why me” of HAE.
We respect your privacy. We collect and store your information only with your consent, and we never sell your information to third parties.
DOWNLOAD THE ADVANCE HAE MOBILE APP
Check out the easy-to-use mobile app created by the HAEA just for our patient community. It’s free! Just go to your app store (for iPhone or Android) and search for "ADVANCE HAE.”
Our mobile app, ADVANCE HAE, makes it quick and easy to complete your regular submissions/reports, allowing you to create your own personal record of every-day life with HAE. The app stores all of your information on your HAE attacks and your therapies in a user-friendly format. It also allows you to create and personalize your record, while transforming your data into easy-to-read visual graphs.
The ADVANCE HAE Mobile App…
is a personal attack diary
provides an easy to read graph of your HAE attacks over time
enters your data automatically into the HAEA Scientific Registry - for members
You can also set reminders* within the app to:
take your medication
reorder your medication
automatic notifications to upgrade as more new features are added
* This feature is available for both iPhone and Android!
As a registry member you will have access to:
Customized health statistics generated by your report submissions
A personalized health record with graphics illustrating your own HAE attack history
Easy access to enter your HAE attack reports through the ADVANCE HAE mobile app
Fast and convenient reporting via your own electronic device
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.