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Alpha-gal Syndrome Survey: Patient Symptoms and Product Preferences

Alpha-gal Syndrome Research Survey

Tick-Borne Conditions United (TBCU) is a nonprofit 501(c)(3) devoted to education, research, and advocacy on tick-borne diseases. TBCU has been retained to conduct a survey of people with Alpha-gal Syndrome (AGS). The questions address symptoms related to AGS and product preferences. As you may know, few studies on AGS exist. The results from this survey will help educate and increase understanding. Thank you in advance for your participation in this important research.

Sincerely, 

Jennifer Platt, DrPH
Cofounder, Tick-borne Conditions United

Beth Carrison
Cofounder, Tick-borne Conditions United
1.You are invited to participate in this research project if you have been diagnosed with Alpha-gal Syndrome. Alpha-gal (galactose-α-1,3-galactose) is a sugar molecule found in most mammals (except in humans and Old World apes).

Alpha-gal Syndrome (AGS) is an allergic reaction to the alpha-gal sugar molecule. Reactions typically occur between zero and 10 hours after people eat mammalian meat or are exposed to products made from mammals, including some medications, cosmetics, vaccines, gelatin, and milk products.

Your participation in this research study is voluntary. You may choose not to participate. If you decide to participate in this research survey, you may withdraw at any time. If you decide not to participate in this study or if you withdraw at any time, we will consider your participation terminated.

This study is an online survey that will take 15-20 minutes. Your responses will be confidential and we do not collect identifying information such as your name or email address. Data will be used for analysis and publication in research journals and other media.

We will do our best to keep your information confidential. All data is stored in a password protected electronic format. You may review the SurveyMonkey Privacy Policy at https://www.surveymonkey.com/mp/legal/privacy-policy/ to examine data transfer procedures. The results of this study will be used to examine symptom trends and food preferences in people who have Alpha-gal Syndrome.

If you have any questions about this study, please contact Dr. Jennifer Platt at jennifer@tbcunited.org.

ELECTRONIC CONSENT: Please select your choice below.

Clicking on the "Agree" button below indicates that:
• you have read the above information
• you authorize use of your written anonymous comments
• you voluntarily agree to participate
• you are at least 18 years of age

If you do not wish to participate in the research study, please decline participation by clicking on the "Disagree" button.(Required.)
2.Have you been diagnosed with Alpha-gal Syndrome?(Required.)
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