Survey Purposes

Perform Research
Discover new scientific and medical insights into Behçet’s diagnostic journeys, symptom profiles, and US geographic distribution.
Inform Providers
Provide insight into Behçet’s treatment, medical care, and disease manifestations from the patient's perspective.
Empower Patients
Give Behçet’s patients a voice and a platform to share their experiences and contribute to research.
Improve Lives
Advocate for change in diagnosis, treatment, and outcomes for those at risk for and living with Behcet's.

FAQs

What is the purpose of this survey?

This survey aims to gather insights into the diagnostic experiences of individuals with Behçet’s Disease, including challenges, delays, and interactions with healthcare providers. The findings will help improve awareness, advocacy efforts, and patient support. The main goals include:

Allow Behçet’s Disease (BD) patients residing in the US to participate in a research study to promote self-advocacy and reduce isolation.
Discover new scientific and medical insights into BD by documenting the diagnostic journeys, symptom profiles, and geographic distribution of BD patients across the United States.
Develop a greater understanding of this condition in the US.
Use this information to advocate for improved outcomes for patients during and after their diagnostic journeys.
Provide valuable insights into BD treatment, medical care, and disease manifestations from the patient’s perspective.

Who is conducting this survey?

The survey is being conducted by the American Behcet’s Disease Association (ABDA), a non-profit organization dedicated to supporting individuals affected by Behçet’s Disease by increasing awareness, providing resources, and advancing research.

Who is eligible to participate?

Adults who have a diagnosis or a suspected diagnosis of Behçet’s Disease as determined by a healthcare provider are encouraged to participate. You must be at least 18 years old and have lived the majority of your life in the United States of America to take the survey.‍

How will my privacy be protected?

Your participation is completely anonymous. No personally identifiable information (such as your name, email address, birthdate, or IP address) will be collected. Your responses will only be used for research and advocacy purposes.
Text that you included in your responses might be quoted for research and/or advocacy purposes, but it will be completely de-identified (meaning no information about you will be included).
Once you have completed the survey, you will have the option of providing your name and contact information and selecting one or more of the options below:
1. You wish to be informed about future research opportunities
2. You would like to receive updates on the survey findingsand/or
3. You would like to be entered into a drawing for one of five gift cards.
If you choose any of the options above and provide your contact information, it will only be used as stated above. Your information will not be stored beyond the duration of the study, and your information will not be distributed or shared in any manner.
If you choose any of the options above and provide your contact information, it will not be linked to your survey answers.
Providing your information is completely optional, and you may still submit your survey without providing your contact information.

How long does the survey take to complete?

The survey takes approximately 45-60 minutes to complete, but this is just an estimate, and it will vary from person to person. It may take you longer, but there is no time limit.

Can I pause the survey and come back later to complete it?

Yes, if you wish to pause the survey, you may save your answers and return to complete it at a later date or time.

To get back into the survey, make sure you:
1. Use the same device you started with (for example: phone, computer, tablet)
2. Use the same internet browser on that device (for example: Chrome, Firefox, Safari, Edge)

Is participation in the survey voluntary?

Yes. Your participation is entirely voluntary, and you may choose to exit the survey at any time.

Will I receive any compensation for participating?

No, there is no financial compensation for completing the survey. However, your input will contribute to improving the understanding of Behçet’s Disease and support for those living with Behçet’s Disease.

How will the survey results be used?

The data collected will be analyzed to identify trends and challenges in the diagnostic journey of Behçet’s Disease patients. The data may also shed light on differences in symptoms for those living in different areas of the United States and how these symptoms may be different from individuals living with Behçet’s Disease in other countries.

The findings may be shared in reports, presentations, and advocacy efforts. The goal is to support better diagnostic experiences, treatment options, and long-term outcomes for Behçet’s Disease patients.

Can I see the results of the survey?

Yes, once all of the datasets have been analyzed, the ABDA aims to publish the results and findings from the survey in a medical/scientific journal. The ABDA will also post results and findings on its website, present some of the results and findings in webinars, and/or share insights in its newsletter.
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Importantly, because this survey is anonymous, participants will never be individually identified in any way.

Who can I contact if I have questions about the survey?

If you have any questions or concerns, you can reach out to the Principal Investigator of the study (Dr. Angela Mitchell, PhD, MS) at info@behcets.com or 1-800-723-4238.

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