Hereditary Angiodema (HAE)

Hereditary Angioedema HAE) also known as C1 Esterase Inhibitor Deficiency is a genetic condition that is very rare and can be life threatening. This condition is classified by swelling, or edema in different parts of the body. These can include the hands, feet, face, and airway (throat). Symptoms can also include abdominal pain, nausea, and vomiting. Swelling of the throat is one of the major concerns as this can cause asphyxiation, which can lead to death. This disease is hereditary, and those with the disease have a 50% chance of passing it on to their children. There are currently 7 FDA approved medications for the treatment of HAE, and 2 additional medications that are in the clinical trial process. At CRCA, we have multiple HAE studies that are available. With each study, medication and study-related care are provided at no cost, while those who qualify are provided compensation for your time and travel for each completed office visit.

For more information on any of the following HAE research studies, please contact Will O’Donnell by calling 205.209.4179 or emailing [email protected]

Injection Study

Ages 13+

Ruconest Prodrome Study

A prodrome is the medical term for clinical signs or symptoms that often proceed medical events. Many HAE patients report having prodromes prior to having an acute HAE attack. Ruconest (C1 INH-R) is currently FDA approved for the rescue of acute attacks. This study will investigate the effectiveness of using Ruconest at the start of the prodrome to see if it can prevent the symptoms from progressing to the development of an acute attack. Enrolling patients with HAE Type I & II

IV and Injection Study

Ages 18-65

CSL Behring 312

The purpose of this study is to investigate a new type of medicine, know as a monoclonal antibody, as a preventative treatment for acute HAE attacks. CSL312 blocks the activity of a blood clotting factor called Factor XlIIa, and may be able to decrease the production of substances that make blood vessels release fluids into the surrounding tissue causing swelling. CSL312 is given by injection in a vein (IV) and under the skin, subcutaneously (SC). This study is open to patients with HAE types 1 & 2, and those patients with a laboratory confirmed Factor XIIa gene mutation.

Injection Study

Ages 12+

The purpose of this study is to determine the following: How does lanadelumab compare to placebo in preventing angioedema attacks in adolescents and adults with non-histaminergic angioedema with normal C1-Inhibitor (C1-INH) and acquired angioedema due to C1-INH deficiency? How safe is lanadelumab when taken by adolescents and adults with Normal C1-INH angioedema and adults with AAE? How much time does it take for the study drug to be absorbed and released from your body?

Observational Study

All Ages


The purpose of this study is to help answer the following question; How effective is lanadelumab (Takhzyro®) in preventing HAE attacks? What is the comparison on quality of life, work productivity and treatment satisfaction before and after lanadelumab treatment? Finally, what is the use of healthcare resources for HAE attacks before and after lanadelumab treatment? Individuals with Type I or Type II Hereditary Angioedema may qualify.

Become a Participant in our Hereditary Angiodema Studies

If you’re interested in participating in a clinical research study at the Clinical Research Center of Alabama, call 205.209.4100 to speak with an experienced coordinator or fill out the contact form below.