Author: Somto Ndubisi, Medical Student and Dermatology Research Fellow
Hidradenitis Suppurativa (HS) is a chronic inflammatory condition that is often underdiagnosed and inadequately treated, leading to delayed care and significant frustration for patients. Because of these challenges, research plays a critical role in improving our understanding of the disease, expanding treatment options, and enhancing the support systems available to those affected by HS.
Research is the foundation of every new medication, treatment guideline, and patient-centered support tool. In the case of HS, it has been instrumental in helping clinicians understand how the disease develops, what triggers flare-ups, and which treatments may be most effective. Beyond the physical aspects, research also supports the development of tools that measure quality of life, assess pain levels, and better understand the emotional and psychological challenges associated with HS.
Various types of research studies continue to deepen our understanding of HS and inform better ways to support those affected by it. Observational studies, for example, involve researchers monitoring patients over time without altering their treatment. This approach helps identify patterns—like which treatments are being used and how patients respond in real-world settings. Clinical trials, on the other hand, test the safety and effectiveness of new treatments, including medications and procedures. Participants in these trials are monitored closely throughout the process. Another important category is qualitative research, which gathers patient perspectives through interviews and focus groups. These studies shed light on the emotional, social, and psychological toll HS can take, offering insights that are essential for comprehensive care.
Behind every research study is a structured process designed to ensure quality and safety. It begins with identifying a clear research question, such as, “What impact does HS have on patients’ daily lives?” or “Does a particular medication reduce flare frequency?” Once a question is formed, the research team designs a study using the most appropriate method to answer it. This step includes creating a detailed plan that outlines how the study will be conducted, how participants will be selected, and what data will be collected.
Before the study begins, it must be reviewed and approved by an Institutional Review Board (IRB), a group that ensures the research meets ethical standards and protects the rights and well-being of participants. After receiving approval, the next step is often participant recruitment. This can be particularly difficult for HS research, as the condition is frequently underdiagnosed and carries a degree of social stigma. Once participants are enrolled, data collection begins. Throughout the study, researchers gather and analyze data, then publish their findings to help others learn from the results.
There are many reasons why people with HS choose to participate in research. Some hope to gain access to new treatments before they are widely available, while others are motivated by the opportunity to improve care for future patients. Many participants find purpose in contributing to scientific knowledge and helping researchers better understand the daily challenges of living with HS. For some, simply knowing that their experience matters and that their voice is being heard makes participation worthwhile.
Before joining a study, participants undergo a process known as informed consent. This involves receiving comprehensive information about the study’s purpose, what participation involves, how long it will last, any potential risks and benefits, and the participant’s rights throughout the study. Signing the consent form indicates understanding. However, participation is voluntary, and individuals can withdraw from the study at any time.
Some studies may include a screening process before enrollment, which could involve laboratory tests, questionnaires, or a review of a participant’s medical history to determine eligibility. What happens during the study depends on its design. Participants might try a new medication, attend regular appointments, complete surveys, or track their symptoms over time. In some cases, photographs of affected areas may be taken with permission. Throughout the study, researchers are required to monitor safety closely. If any side effects or issues arise, participants are provided with appropriate support and may exit the study at any time.
Participants in research have important rights. These include the right to withdraw from the study at any time without losing access to care, the right to be treated with respect, the right to privacy, and the right to receive updates as new information becomes available. They also have the right to decline participation in any study that doesn’t feel right for them.
For those considering whether to participate, it can be helpful to ask the study team a few key questions:
- What is the goal of the study?
- What will I need to do?
- Will it cost me anything?
- What are the possible risks or side effects?
- How will this study help people living with HS?
These questions help ensure that participants are making informed and confident decisions.
Participation in research is entirely voluntary and has no effect on the medical care a person receives. Still, the contributions of participants are vital. Research relies on the involvement of patients. Whether someone chooses to take part in a study or simply learns more about how research works, every effort helps move the field of HS care forward. From improving diagnostic accuracy and expanding treatment options to amplifying patient voices, every contribution makes a lasting impact.