Prurigo nodularis (PN) is a potentially debilitating skin condition that can be hard to treat.¹ Clinical research has improved the outcomes and quality of life of people with many different skin conditions, including PN.² However, participants in studies for skin conditions are not always representative of the populations who live with those skin conditions.

One measure of representation is to reflect U.S. census data. For instance, researchers in one review considered studies representative if they included at least 20 percent non-White or Hispanic participants and at least 45 percent women. Researchers examined 392 dermatology studies that took place between 2015 and 2020. They found that only 38.1 percent of the studies reported having at least 20 percent non-White participants. Just 71.9 percent of dermatology clinical studies in this period reported the race and ethnicity of participants at all, so much remains unknown.³

See if You May Qualify for a Clinical Trial

PN occurs much more often in the African American population. In one large, detailed study of people with PN, researchers found that African Americans were about 3 times more likely than White participants to be affected by the condition.⁴ PN also tends to become more severe in people of color.⁵ Since PN disproportionately affects people of color, it’s important that clinical studies include a representative population when searching for more effective treatments.

Here are five reasons why representative participation is needed in clinical studies, especially for skin conditions like PN.

1. Representative Study Populations Provide More Information

Different drugs may be either more or less effective for different groups of people. Including people with as many different backgrounds as possible in a clinical study will help researchers learn as much as possible about how a new drug might work for different races, ages, sexes, or ethnicities.⁶

2. Lack of Representation Slows Down Medical Progress

On the other hand, when there’s a lack of representation in clinical studies, finding new treatments that work slows down for everyone. In fact, some important medical breakthroughs may not have been spotted if a clinical study had not included a representative population, for example, Black participants with different genetic variations.⁷ The presence of diverse participants gives researchers more information about diseases and potential treatments for all.

3. Those Left Out of Research May Benefit Less

Therapies that are tested only in specific groups of people may only be considered safe for people in those groups. If a new drug is tested only on certain people, there may be less information available about its safety or effectiveness for other groups. If it later becomes available on the market, the new drug may be restricted to those in whom its safety has been evaluated.⁷ In other words, participating in clinical research gives you a seat at the table of medical progress.

4. Treatments Proven in Representative Clinical Trials Earn More Trust

If you knew the medication your dermatologist prescribed had worked well for people like you, would you be more likely to trust that it would work for you, too? Overall, making research a more representative field at every level can help us all better trust that medical advances and new drugs will be safe and work.⁷

5. Representation in Research Is a Step Toward Health Equity

Not everyone has equal access to quality health care or other resources that they need to be their healthiest. This is known as health inequity. Some of the factors in health inequity include race, ethnicity, gender, identity, sex, and socioeconomic status. Including representative participants in clinical studies isn’t, on its own, a solution to the problem of health inequity. However, failing to make clinical studies more representative and inclusive can only make health inequities worse.⁷

See if You May Qualify for a Clinical Trial

Talk With Others Who Understand

MyPrurigoTeam is the social network for people with PN and their loved ones. On MyPrurigoTeam, thousands of members come together to ask questions, give advice, and share their stories with others who understand life with PN.

Do you or your loved one have PN and are interested in joining a clinical trial? Have you participated in a clinical study before? Share your experience in the comments below, or start a conversation by posting on your Activities page.