US HAEA Scientific Registry
Thank you for your interest in the US HAEA Scientific Registry!
Online registration is now available! Please read through the following information before clicking on the link at the bottom of the page to register.
A Scientific Registry is primarily a secure database of information, made available to HAE scientists whose research benefits you, your family, and all whose lives are affected by HAE.
Your participation is vitally important!
Why have we created the US HAEA Scientific Registry?
Medical research depends on the collection of clinical samples (such as DNA). This is especially true for research in rare diseases like HAE. The Scientific Registry is an important research initiative that includes both a bio-repository for DNA samples and a collection of written data.
The Scientific Registry has gone through an Institutional Review Board (IRB) to ensure that privacy is strictly protected and that all DNA samples and data provided are kept completely confidential. All samples and data submitted to the US HAEA Scientific Registry are completely de-identified to protect your privacy.
Criteria for Participation
- The Registry is currently open only to US citizens.
- Participants must have HAE or be a blood relative of someone with HAE.
- Participants agree to submit two small vials of blood as well as brief, online questionnaires.
- Participants agree to keep their records up to date for at least 5 years
Participation is voluntary. Please read the Frequently Asked Questions so that you fully understand the Scientific Registry. It is important that you make an informed decision to participate in this program. Again, please note that all of your information and records will be kept strictly confidential.
What happens after I register?
- Your registration will be reviewed by a Scientific Registry Administrator.
- If you qualify to participate, you will receive a confirmation letter, a Consent Form to fill out and return to the Registry, and a sample donation kit through the US Mail.
- Participants also complete a General Medical History and an HAE Past Medical History form. Participants with HAE will continue to fill out online questionnaires regarding their HAE on a quarterly basis as well as submit one report for each HAE attack experienced.
- You will be eligible to receive awards for membership (see below) in appreciation for your dedication!
If you have any questions, a Scientific Registry Administrator will be glad to help you. Please contact the US HAE Association Scientific Registry by sending an email to or call 866-798-5598.
Membership has its REWARDS!
The Scientific Registry recognizes the devotion of its participants with an annual award. A beautifully crafted plaque from HAEA is yours for each year that you complete and submit all of your Scientific Registry questionnaires.
The plaque holds a space for four small medallions that can be added for each year all questionnaires are completed, culminating in a Five Year Achievement Medal.
Thank you for helping to make a better life
for future HAE generations… and a cure!
(Please review the criteria for participation listed above before registering.)