The number of clinical trials conducted in the U.S. has grown by over 190% since 2000.

To aid doctors and scientists in the treatment, prevention, and diagnosis of today’s most prevalent diseases, we study them. This involves testing new drugs or devices. While these drugs and devices go through rigorous testing before they advance to the next stage, clinical trials are a crucial part of the research process.

We surveyed nearly 180 clinical trial participants and almost 140 nonparticipants about their experiences and thoughts around clinical trials. Whether you’ve participated in a clinical trial before or are considering participating for the first time, we can help you understand what to expect – from financial compensation to the likelihood of participating again. Continue reading to learn more.

Of the over 170 current and former participants surveyed, nearly two-thirds were women, and almost 80 percent were Caucasian. While research suggests clinical trials – particularly those focused on cancer treatments – could be more ethnically diverse, we found nearly twice as many were Hispanic (seven percent) than Asian-American or African-American (four percent).

Almost 40 percent lived in the South, with 18 percent participating in clinical trials lived in the Northeast. Nationally, over 17 percent of the population lives in the Northeast, and nearly 38 percent lives in the South. Finally, clinical trial participants were most likely to be millennials or baby boomers.

We asked respondents what inspired them to participate in the studies for which they enrolled. While over a quarter wanted to get the newest treatment for a medical concern or illness, over a third wanted to help scientific research. Many clinical trials have had life-saving effects on those who participate, and those who are healthy and participate in these trials have a significant impact on the findings of these studies.

While almost 60 percent of those who participated in trials had a condition, nearly 26 percent chose to engage as healthy participants. Because many trials fail due to a lack of participation, the efforts of those who are healthy and looking to help advance scientific research can be a rewarding experience. As one person told us, “My reason was twofold; one, to help someone who comes after me and two, to give myself an additional chance to beat the disease.”

While many clinical trial participants received compensation, many did not get paid for their participation in clinical trials. From those who identified as healthy or participating to help further scientific research, to those who were sick and needed the newest or most helpful medical support, more than 30 percent didn’t receive any monetary compensation for their time. However, many clinical trial participants received free treatment that would have been billed to their insurance.

However, nearly 70 percent did receive financial compensation for participating in clinical trials. Paid research can help draw attention to a clinical trial and encourage timely sign-up but doesn’t always ensure a diverse study group. The most common compensation was between $100 and $249, while some reported receiving much higher amounts. Just over 30 percent said they received $250 or more.

We asked those who had experience with clinical trials how they felt about the process. From doctor visits to treatments received and the follow-up care afterward, over a third ranked their experience a five out of five (very positive).

Clinical trials don’t just help move the medical community forward. They can also be an overwhelmingly positive experience for participants, regardless of their health needs.

More than half rated their experience either a three or four on our scale, with the rankings of all participants averaging a 3.8. In fact, 86 percent would participate in a clinical trial again.

At the time of this writing, President Donald Trump’s budget proposal hadn’t been passed by Congress, but cuts to key programs supporting medical and scientific research agencies could have a profound effect on the advancement of medical research moving forward, according to some critics. Given these proposed changes, as well as the potential for travel bans and limitations to negatively impact the medical community, we asked those who participated in clinical trials in the past if they were concerned about the Trump administration’s impact on future studies.

A majority (58 percent) said they were concerned with the potential impact changes from the new administration could have, and over two-thirds of those younger than 50 felt worried about changes to clinical trials.

While previous studies may have found a gender gap in diversity among clinical trials, our survey found not only were women more prevalent participants, they were paid more for their participation and were much more likely to rate the experience highly compared with men.

Nearly two-thirds of women participated in clinical trials to manage or treat specific health concerns, compared with just over half of men. Half of them rated their experience a five out of five, while only 17 percent of men said the same. Women were also more likely to participate in further trials (93 percent), compared with men (77 percent).

Every year, almost 1.7 million people are diagnosed with cancer in the United States, and nearly 600,000 die from the disease. Despite the prevalence of cancer in the U.S., only about 3 percent of adults diagnosed with cancer participate in clinical trials to help manage the symptoms of their condition. This limited engagement causes 1 in 5 cancer-focused trials to fail due to a lack of participation.

We found those with cancer rated their clinical trial experience more favorably than those not diagnosed. Participants with cancer were more likely to rate the quality of their experience either a four or a five out of five, compared with those who were cancer-free.

Almost half of those diagnosed with cancer also participated in clinical trials without the offer of compensation, and those who did receive money got less than $249 on average. Those who weren’t diagnosed were almost three times as likely to receive between $750 and $1,499 for their participation in clinical trials.

Over a third of participants younger than 50 expressed participating in these studies to get the newest treatment for a particular illness, and more than 20 percent did so to get additional care and attention.

Those older than 50 were more than twice as likely to participate in clinical trials to help scientific research, compared with those younger than 50; and were less likely to indicate doing it for money. The 50-plus group was also more likely to participate in clinical trials to help others who might be sick.

While those younger than 50 acknowledged participating more often for their health, they were five times less likely to participate in a clinical trial again compared with those over the age of 50.

We also surveyed 139 people who have never participated in a clinical trial to gauge their willingness to participate in the future. Of those polled, 92 percent would consider a clinical trial at some point in their life.

For over a third of those who responded positively, their primary motivation was to help scientific research, and for more than 26 percent, it was to get the newest medical treatment. Less than 10 percent would do it for money.

From the healthy, looking to advance scientific research for the sake of others, to those diagnosed with diseases like cancer looking for the newest and most innovative treatments available, most people who participate in clinical trials not only have a good experience but also would consider doing it again.

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We surveyed 178 clinical trial participants on their experiences. In addition, we asked 139 people who have not participated in a clinical trial about their opinions on the subject. This survey has an 8 percent margin of error, calculated from an estimated confidence level, population size, and response distribution.

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