US HAEA Scientific Registry

Patient Driven Research for a Cure

Online registration is now available! Please read through the following information before following the link at the bottom of the page to register.

Your HAE Association is hard at work on behalf of the HAE community- we are asking each and every HAE patient to participate in The US HAEA Scientific Registry- a new and important research initiative that includes both a repository for DNA samples and a patient registry. The Registry has gone through an Instituitional Review Board to ensure that privacy is strictly protected and that all DNA samples and data provided are kept completely confidential.

Why have we created the US HAEA Scientific Registry?
One of the major requirements for any type of medical research is the collection of clinical samples (such as DNA). This is especially true in the case of rare diseases such as HAE. The US HAEA Scientific Registry will collect clinical samples and then make them available to qualified researchers who will work toward finding a cure for HAE!

Through your participation in the Registry, this research process becomes easier, faster and less costly.

HAE patients and their blood relatives who do NOT have HAE are eligible to participate in the Registry. The Registry is currently open only to residents of the United States. Individuals who qualify to participate will submit two small vials of blood and one cheek swab to the US HAEA Scientific Registry along with a general medical history and associated clinical forms.

The Registry is looking for two different groups of individuals to participate

People who have HAE
People who do not have HAE, but are blood relatives of someone who does

It is up to you to decide if you want to donate biological samples to the Registry. Please also read the frequently asked questions so that you fully understand what the Registry is and how your samples will be collected if you qualify to participate. It is important that you make an informed decision to participate in this program. Please note that all of your information and records will be kept strictly confidential.

Criteria for Participation

Participants in the Registry:

Agree to donate two blood samples and one swab of cheek cells.
Agree to provide a general medical history
Agree to remain in contact with the US HAEA Scientific Registry for at least 5 years, to keep your records up to date, and are willing to be re-contacted if additional samples are needed.

How a sample becomes part of the Registry

Interested individuals complete the Scientific Registry registration form and consent to participate in the project. The Scientific Registry reviews each application.
Approved Scientific Registry participants will receive a donation kit in the mail. Participants will take the blood sample materials to their doctor, clinic or blood draw center and have their blood drawn. The kit is then mailed to Genelogic, a private lab, where the sample will be processed. Participants will also follow the simple directions included in the donation kit for the cheek swab and mail that swab back to a private lab where the sample will be processed.
Participants also complete a general medical history and an HAE Past History form. This information is then stored in an electronic database.
Participants will submit reports regarding their HAE via the Internet on a quarterly basis as well as submit one report for each HAE attack experienced.
Once our Registry is underway, qualified scientists will be able to request the HAEA to use these samples for HAE research.

We are committed to making your participation in this project as easy as possible. If you have any questions, the Scientific Registry Administrator will be glad to help you in any way. Please contact the US HAEA Scientific Registry by sending an e-mail to scientificregistry@haea.org or call 866-798-5598.