INFORMATION ABOUT A NEW HAE STUDY: Hereditary Angioedema (HAE) and Post-Traumatic Stress Disorder (PTSD)

Jul 29, 2015

Overview: Dr. Christiansen and her co-investigators at the US HAEA Angioedema Center at the University of California San Diego have initiated a study to understand the relationship between HAE attacks and trauma, stress, anxiety or depression. Understanding how stress may cause attacks of angioedema could ultimately lead to new insights and therapies to reduce the burden of disease and enhance the quality of life of individuals with HAE and their families. This study is a first step in this direction, and seeks to understand the relationships between HAE and stress. We are asking for your participation in this important investigation. Although there is no direct benefit that will accrue to you for participating, this study should eventually benefit all members of our HAEA community.

Are you eligible to participate? You must have a known diagnosis of HAE with C1 inhibitor deficiency (type I or type II) or HAE with normal C1 inhibitor (formerly known as type III) and be at least 18 years old to participate. The first 400 patients with HAE due to C1 inhibitor deficiency and first 100 patients with HAE with normal C1 inhibitor will be included in the investigation.

What will you need to do? You will be given information about the study: its benefits, risks and your rights as a patient. Any questions or concerns that you have will be answered. If you sign the consent, you will be sent a link to a secure website where you will fill out a specific questionnaire. You will be asked to fill out 8 different questionnaires to complete the study. These surveys will capture the severity of your HAE, along with measures of stress. You will be given access to only one survey at a time and will receive a link to the next survey once you have finished the prior survey. No personal identifying information will be collected. You will have 4 weeks to complete all 8 surveys.

Will all of your information be confidential? Yes. The survey data will be identified only by a random study code and will not include any personal identifying information. Your personal information will never be linked to the survey data. The investigators will keep a separate log that links your name and contact information with your study code. This log will be stored securely on a protected computer and in a locked file within the Angioedema Center at UCSD. Your personal information will only be used to send you the links to the surveys and to contact you.

Will you be compensated for the time that you spend completing these questionnaires? We understand that you are giving up your time to help us with this investigation. We would like to acknowledge this by providing gift cards of your choice from Starbucks, Costco, or Target in appreciation of your effort. We will provide a $5 gift card for each of the 8 questionnaires you completed within the specified timeline (one month).

How do you enroll in the study?
Call the UCSD Angioedema Center at (858) 657-5335. You will need to leave your name, type of HAE, email address, telephone number, and the best time to call you back. You will then be contacted by either the study coordinator (Jennifer Blair) or the Principal Investigator (Dr. Sandra Christiansen) to answer any questions about the study.

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