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Study Participation

Participating in a research study can help benefit the development of future medications and treatments in allergy management. Learn more about our trial process and your involvement below.

Participating in a research study

If you are interested in participating in one of our research studies, it’s important that you understand our process, what is needed to participate, and what you can expect as a participant. This is outlined below. Additional information can also be found in our FAQs.

Informed consent forms

Before joining a research study, all participants must first sign an informed consent form. This document clearly explains the project, your role in the research study, any risks that may exist, the length of the study, and other important details. We encourage all participants to take as much time as they need to review the information given. The research study coordinator will then meet with you to answer any questions you may have.

Your first study visit

At your first study visit, the informed consent form is signed (if not previously signed) and we collect your baseline medical data. For example, we will ask about your medical and surgical history, smoking history, and overall health. We will also ask about any current or recent medications, and will check blood pressure, pulse, height, and weight before the study doctor performs a brief physical examination. Blood work, lung function testing, a cardiogram, or other medical diagnostic tests may also be performed at this time.

Follow-up visits

Once your initial visit is over, you will return regularly for brief follow-up study visits. At each appointment, we ask how you have been since your last visit, whether there have been any changes to your medications, and whether you have seen any other doctors or required a visit to the hospital. We check your study diary (a record of your medications and symptoms), and collect and dispense medication. Other procedures may also be performed, depending on the particular requirements of the research program. Staff will advise you as to what to expect during your next scheduled visit.

Your final study visit

On your final study visit, all of your study-related items, such as medications and diaries, are collected, and final study assessments will be completed. If required, the study physician may perform another brief physical examination.

Support and feedback

Throughout these visits, we actively encourage you to ask questions or voice concerns. We also provide participants with the office telephone number for the principle research coordinator, as well as a 24-hour emergency telephone number.

Testimonials

S. F.

“Signing up for a Clinical Trial brought on so many emotions. I was nervous and apprehensive but also desperate and hopeful. The 15-month experience ended up being something I’ll never forget. The entire process from enrollment, travel arrangements, clinical visits and reimbursement was smooth and painless. We received the utmost care, kindness and compassion from the treating clinic and the pharmaceutical company. Without patient participants, progress cannot occur. I’m thankful to help create meaningful change and I hope you also consider shaping HAE history and making a real difference.”

G. M.

“Thank you for everything. I especially want to thank the clinic for everything you’ve done to help me. I am deeply grateful for the support and medical treatment I’ve received.”

C. M.

“When my sister told me about the Clinical Trial and encouraged me to submit my name, I was very apprehensive and scared. I had just started my HAE journey that very same year and was terrified to start new medication. However, I am so unbelievably grateful that I took that step and was able to be a part of a life changing experience. We were treated so well, and I even looked forward to the travelling and visits because I knew I was going to help others by doing this. I would not hesitate to participate again, and I encourage others to please do the same if at all possible. Clinical trials are the only way we will begin to have access to new life saving medication. It’s an experience I will never forget and talk about often.”

J. P.

“I still have attacks but just a few a month now… usually have to call 911 once a month to send an ambulance to give me an iv for berinert for stomach and throat swells.”

Apply to participate in a research study

If you have read the above study details, and would like to apply to participate in a current study, please check our list of current trials.

If you are interested in participating in future trials, and would like to know when new trials become available, please join our mailing list by filling out the form below, or follow us on Facebook.

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