If you’re living with atopic dermatitis (AD) and have darker skin, you already know it doesn’t always look or behave the way medical textbooks suggest. “It presents with distinct coloration, morphologic features, and distribution patterns that differ substantially from those in lighter-skinned individuals,” says Lucie Joerg, a research fellow with the Skin of Color Center at the State University of New York Downstate Health Sciences University in Brooklyn. For example, she says, redness is less common or noticeable in darker skin tones than in lighter skin and might appear purple, gray, or dark brown. People with darker skin tones are also more likely to have bumps and lesions, plus post-inflammatory hyperpigmentation or hypopigmentation can last long after a flare improves.Part of the reason these differences aren’t always recognized is that people of color have long been underrepresented in clinical trials for AD. “Historically, white participants have made up the largest share of AD trial populations, and Black/African Americans are the most underrepresented racial group in dermatology trials overall. Hispanic/Latino and American Indian/Alaska native populations are also substantially underrepresented,” says Jared Jagdeo, MD, director of the Skin of Color Center at SUNY Downstate Health Sciences University. Asian people have also been underrepresented in many AD studies, despite evidence that the condition may present differently in these populations, including more sharply defined, scaly lesions and features that can overlap with psoriasis.
That gap comes with real consequences. It limits what researchers and clinicians understand about how the condition shows up across skin tones and how well treatments work for different populations. Even commonly used severity scoring tools can miss or underestimate inflammation in darker skin, because they’re based heavily on visible redness, says Dr. Jagdeo.
Differences in recognition, assessment, and research participation can contribute to delays in diagnosis, unequal access to specialists, and variations in treatment. Clinical trials are one way to help close these gaps, by ensuring new therapies are studied in people who reflect the full diversity of people living with the condition.
Increasing the participation of people of color in clinical trials is an important step in improving how AD is understood, diagnosed, and treated across all skin tones. The condition is not one size fits all. It varies in how it appears on the skin, how severe it becomes, and how the immune system drives it. “Yet current treatment guidance is based predominantly on data from white patients,” says Jagdeo.
This leaves important questions to be answered regarding which treatment approach or therapies work best for certain groups, rather than assuming a single standard protocol works equally well for everyone with the condition.
According to Joerg, expanding representation in AD clinical trials helps:
Close long-standing evidence gaps regarding how AD presents, feels, and responds to treatment in darker skin
Improve diagnostic accuracy and severity scoring tools that may miss or underestimate inflammation in darker skin tones
Strengthen treatment guidance and drive more personalized care
Expanding representation can not only move research forward, but also create meaningful opportunities for the people who choose to take part.
Clinical trials help advance care for everyone living with AD but can also offer direct benefits to participants. Although every trial is different, by joining, you may:
Be at the forefront of medical innovation by participating in research that’s shaping the next generation of AD treatment
Receive innovative treatment. “Many [trials] provide access to medications years before they’re commercially available, giving you [a treatment] option for symptoms that are not controlled with standard approaches,” says Raman Madan, MD, a dermatologist at Northwell Health Physician Partners in Lake Success, New York.
Be connected with doctors who specialize in AD — potentially with experience treating skin of color
Receive close monitoring and structured care, with careful oversight from a research team who tracks symptoms and side effects, says Joerg
Contribute to data that may help improve the diagnosis, treatment, and outcomes for future generations of people of color with AD
Get financial support, as some studies offer compensation for your time, travel, or related expenses to help make participation more accessible
Clinical trials are carefully controlled for a reason, and that structure can come with some trade-offs. Take time to review the details and ask questions to help you decide if a study fits your life and needs. Here are a few key considerations:
Strict Requirements and Time Commitments “Trials follow very rigid protocols,” says Dr. Madan, that can include frequent appointments, set schedules, and limited flexibility. Depending on your location, travel to the study site may also be necessary.
Possible Side Effects or Added Procedures “Clinical research always carries some unknowns, especially if a therapy is investigational,” says Jagdeo. Make sure you understand all of the details related to pausing current treatment (a “washout” period), scheduling extra visits, and undergoing additional testing, such as blood work or skin biopsies.
The Possibility of a Placebo In blinded trials, not everyone receives the active treatment. There’s no guarantee you’ll get the investigational therapy or, if you do, that it’ll be effective for you, says Madan.
Weighing these factors against the potential benefits can help you make more informed decisions about participating in a clinical trial for AD.
Taking part in a clinical trial can be a valuable experience, but it’s also a commitment. Before enrolling, make sure you have a clear picture of what participation involves. Keep these factors in mind while researching and vetting trials:
Search trusted organizations. The most reliable public site is ClinicalTrials.gov, says Jagdeo, as it lists a study’s purpose, eligibility criteria, locations, contacts, and often the study phase and design. He also recommends searching through the National Institutes of Health Clinical Center and National Eczema Association.
Look for signs that the trial is inclusive. “It’s important to note whether the investigators have experience with skin of color; whether the protocol measures more than skin redness alone; whether dyspigmentation and itch are being assessed; and whether the site appears committed to diverse enrollment and culturally competent care,” says Joerg.
Review the eligibility criteria. Each study looks for participants who meet specific requirements, such as AD severity, age, and prior treatment history. They also each have their own set of factors, known as exclusion criteria, that may make you ineligible for the trial.
Talk to your dermatologist. This can be especially helpful if they’re well versed in treating people of color. They can provide recommendations and possibly point you in the direction of a local hospital with a skin of color clinic, Madan notes. You can search for a dermatologist through the Skin of Color Society’s healthcare provider directory to find one with expertise in treating diverse skin tones.
Knowing the right questions to ask can help you feel more confident and in control as you consider enrolling in a clinical trial.
Representation in research matters, and a more diverse clinical trial population leads to better diagnosis tools and treatments that reflect how atopic dermatitis shows up in darker skin tones.
Clinical trials aren’t only for researchers. They also offer real benefits to participants, from access to cutting-edge treatments to specialized care and close monitoring.
Before you enroll, it’s important to ask questions and advocate for yourself and your needs, including how symptoms are measured and how safety is supported throughout the study.