Behçet's Disease in the United States: An ABDA survey of symptoms and patients’ diagnostic-journey experiences

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PARTICIPANT INFORMATION AND INFORMED CONSENT FORM

Protocol Title: Behçet’s Disease in the United States: An ABDA Survey of Symptoms and Patients' Diagnostic-Journey Experiences

Protocol #: 2025-ABDA-Survey-1
Sponsor: American Behcet's Disease Association
Principal Investigator: Dr. Angela Mitchell, PhD, MS
Institution: American Behcet’s Disease Association
Address: P.O. Box 186, Feasterville, PA 19053
Telephone: 1-800-723-4238

KEY INFORMATION ABOUT THIS RESEARCH STUDY

You are being asked to be a participant in a research study because you have a diagnosis or a suspected diagnosis of Behçet’s Disease (BD) as assessed by a healthcare provider and are an adult (age 18+) living in the United States of America (US).

The following is a concise and focused presentation of key information to assist you in understanding why you might or might not want to participate in the research.

Purpose
This anonymous, online survey has five overarching specific aims with sub-aims:
1. Engage American Behçet’s Disease (BD) patients’ participation in research studies to promote self-advocacy and reduce isolation.
2. Discover new scientific and medical insights into BD by documenting the diagnostic journeys, symptom profiles, and geographic distribution of Behçet’s Disease across the United States.
3. Collect information on the average length of US BD patients’ diagnostic journeys, defined as the time from the first recognized symptom to diagnosis by a medical professional.
4. Provide valuable insights into Behçet’s Disease treatment, medical care, and disease manifestations from the patient’s perspective.
5. Identify potential geographic-specific symptoms or symptom clusters within the US.

Voluntary Participation
Your decision to be in this study is voluntary.

Withdrawal
If you decide to be in this study and then change your mind, you can leave the study at any time without penalty.

Length of Participation
Completion time for the survey is estimated at 30-60 minutes but may vary based on your individual responses.

Procedures
There are no medical procedures associated with this study.

Risks
There are not expected to be any risks to you as part of this study. There are not expected to be any physical risks to you as part of this study.

Benefit
There is no guarantee that you will receive any direct benefit as a result of your participation in this study. The indirect benefits include a sense of connection to the Behçet’s community, helping provide information which could reduce others’ diagnostic journey, and contributing to the field of research for Behçet’s Disease.

Alternatives to Study Participation
Your alternative is to not take part in the study.

Costs
There are no costs to you for your participation in this survey.

Confidentiality
There are provisions in place by the study protocol and study site to help protect the privacy and confidentiality of your personal health information and study information.

This overview does not include all of the information you need to know before deciding whether or not to take part. Much additional detail is given in the full consent form, which can be found on the pages that follow. Be sure to review the rest of this consent form before deciding about participation.