{"id":18837,"date":"2020-09-11T15:55:23","date_gmt":"2020-09-11T20:55:23","guid":{"rendered":"http:\/\/thepapergown.zocdoc.com\/?p=18837"},"modified":"2023-03-06T09:48:58","modified_gmt":"2023-03-06T14:48:58","slug":"should-you-volunteer-for-a-covid-clinical-trial","status":"publish","type":"post","link":"https:\/\/www.zocdoc.com\/blog\/guides\/should-you-volunteer-for-a-covid-clinical-trial\/","title":{"rendered":"Should You Volunteer for a COVID Clinical Trial?\u00a0"},"content":{"rendered":"

In the past few years, I’ve been asked twice to participate in clinical trials. I<\/span> said yes both times without hesitation.\u00a0<\/span><\/p>\n

As a health reporter, a big part of my job is reading \u2014 and talking to experts about, and communicating the significance of \u2014 studies. The hours I’ve spent steeped in medical journals have made (at least) one thing abundantly clear: M<\/span>odern medicine stands on the shoulders of anonymous volunteers. Any time a new drug hits pharmacy shelves or recommendations for preventive health screenings change, it means a lot of people like me said, \u201cSure, I\u2019ll be part of your data set.\u201d<\/span><\/p>\n

Since the pandemic started, I\u2019ve gone from someone who\u2019s willing to participate in research to one who proactively seeks out lab-rat opportunities. So far, I\u2019ve been in two trials: One tracked the pandemic\u2019s effect on <\/span>mental health and relationships<\/span><\/a> via online surveys in order to assess the psychological and emotional benefits of receiving daily text messages. The other asked people who believed they hadn\u2019t been exposed to the coronavirus to <\/span>submit blood<\/span><\/a>, which researchers tested for antibodies to determine how widely the virus had spread throughout the country.<\/span><\/p>\n

Modern medicine stands on the shoulders of anonymous volunteers.<\/span><\/p><\/blockquote>\n

I\u2019m hardly the only person who\u2019s felt the pull to be part of COVID research \u2014 much of what doctors, epidemiologists and other experts have learned about the coronavirus is thanks to countless<\/span> people worldwide who\u2019ve donated their blood, time and medical records in the name of public health.\u00a0<\/span><\/p>\n

\u201cWe were surprised and overwhelmed at how much of a response we got \u2014 it had never been easier, in my entire career, to enroll people into studies,\u201d says Jonathan Kanter, a clinical psychologist and director of the Center for the Science of Social Connection at the University of Washington, whose lab ran the COVID mental health trial I joined. \u201cThere was a sense of solidarity among people that they wanted to be part of a community, working together to solve this.\u201d<\/span><\/p>\n

If you\u2019re considering taking the participation plunge, here are seven things to know, courtesy of one seasoned study subject (me) and a few experts.<\/span><\/p>\n

\n

Finding COVID clinical trials is easier than you might think<\/span><\/h3>\n

There are plenty of opportunities to get involved in COVID research, and you can use a few different sites to find trials accepting healthy and asymptomatic volunteers.<\/p>\n

ClinicalTrials.gov<\/a> <\/em><\/strong>has the most comprehensive list of clinical trials related to a wide range of health conditions, including COVID-19. If the sheer amount of information feels overwhelming, another option is Trials Today,<\/a><\/em><\/strong> which makes it easy to whittle down your search to only the most relevant trials. I put in my age, gender and zip code and ended up with 6 results, compared to 161 when I entered similar information on ClinicalTrials.gov. If you’re specifically looking for vaccine trials, your best bet might be the COVID-19 Prevention Network<\/a>,<\/strong><\/em> created by the NIH’s National Institute of Allergy and Infectious Diseases to conduct phase 3 clinical trials for COVID-19 vaccines and monoclonal antibodies.<\/p>\n

Doing good can boost your mood<\/span><\/h3>\n

Right now, unless you\u2019re a healthcare worker, there aren\u2019t many tangible ways to directly help COVID patients. But joining a clinical trial is a bonafide act of altruism. In fact, back in 2005, doctors<\/span> coined the term \u201cinformation altruist\u201d to describe someone who donates their genetic data or other personal health information to research for the sake of the greater good, even if doing so doesn\u2019t benefit them individually.<\/span><\/p>\n

Giving back also happens to come with well-supported <\/span>psychological and emotional benefits<\/span><\/a>.<\/span><\/p>\n

\u201cPeople who are randomly assigned to help others or to focus on the happiness of others become happier,\u201d says happiness researcher Sonja Lyubomirsky, a professor and vice chair of psychology at the University of California, Riverside. \u201cWe think what\u2019s special about doing acts of kindness is that they make us feel more connected to the people we help. It makes us more optimistic about humanity as a whole, and it makes us feel like a better person.\u201d<\/span><\/p>\n

Be prepared for the possibility of rejection<\/span><\/h3>\n

Volunteering for a trial doesn\u2019t guarantee participation in it. Even if you do get accepted, the process of becoming a study subject can be slow going. I was accepted into the COVID antibodies trial two months after I signed up. Hopeful volunteers are rejected for all sorts of reasons \u2014 the trial could be full, or you might not be an ideal candidate because of your health history or demographic profile. It’s crucial for clinical trials to include diverse groups of participants.\u00a0<\/span><\/p>\n

\u201cOne of the aspects of volunteers \u2014 it\u2019s just a fact \u2014 is that they tend to be white,\u201d says Dr. William Schaffner, medical director of the National Foundation for Infectious Diseases and professor of preventive medicine and infectious diseases at Vanderbilt University\u2019s School of Medicine in Nashville. \u201cAnybody who\u2019s running a clinical trial is working very hard to try to recruit people of color, underrepresented minorities, into the trials so that the final results will indeed more represent the population in the United States.\u201d<\/p>\n

Consistency is (almost) everything in self-reporting<\/span><\/h3>\n

Some clinical trials ask participants to \u201cself-report\u201d information. Typically, this entails repeatedly filling out a questionnaire about your emotions, physical symptoms or behavior. For example, I had to submit daily ratings of my mood and interactions with others for the COVID mental health trial. If you\u2019re given questions that seem open to interpretation, that\u2019s OK. Just decide how to answer them and then do it the same way every time.<\/span><\/p>\n

\u201cBecause we did [the study] for a month straight, you get to serve as your own control,\u201d Kanter says. \u201cAs long as you\u2019re responding to these items the same way every day, we can statistically control for the fact that you may be responding to these items differently than somebody else, because we have a whole bunch of your data. But we can\u2019t guarantee that you\u2019re responding to the single items the same way that another person is.\u201d<\/span><\/p>\n

Always read the fine print<\/span><\/h3>\n

During the trial recruitment process, researchers should supply you with detailed documents explaining why they\u2019re running the trial, what they expect to learn from it, the requirements for participation and any potential health consequences that participants might incur.\u00a0<\/span><\/p>\n

If you have questions or concerns after reading the trial materials, you should follow up with the research team. (Their contact info should be provided.) It\u2019s best to speak to the doctors or scientists running the trial, rather than your own doctor, even if that\u2019s who recruited you.<\/span><\/p>\n

Some people quit when they discover they\u2019re controls. But if you\u2019re participating for the greater good, don’t be a fairweather study subject.\u00a0<\/span><\/p><\/blockquote>\n

\u201cGo to the study people, because the doctor may only have cursory information about the study they\u2019re suggesting to you,\u201d Kanter says. \u201cFrom my end, I usually love those participants that are thinking about whether to join the study or not. They are going to be more committed to the study if they join it, so I love those questions.\u201d<\/span><\/p>\n

Don\u2019t feel bad about prioritizing your own health, even if that means quitting\u00a0<\/span><\/h3>\n

Many COVID-19 clinical trials recruit hospitalized patients who have no options for recovery other than a new treatment of uncertain efficacy. But if you sign up as a healthy volunteer to receive a vaccine or to try any other type of intervention, and then you learn about participation requirements or potential risks that make you uncomfortable, you can opt out.\u00a0<\/span><\/p>\n

\u201cPeople are generally wary of new things that haven\u2019t been out there for a long time and validated,\u201d Schaffner says. \u201cThere\u2019s this notion of (which is correct) \u2018Well, you\u2019re experimenting on me.\u2019 Well, that\u2019s right, but we\u2019re doing it only in a voluntary fashion and with fully informed consent. There\u2019s a lot of information for you to think about before you sign on the [dotted] line.\u201d<\/span><\/p>\n

There\u2019s a chance you\u2019ll get sugar pills, or no treatment at all\u00a0<\/span><\/h3>\n

Volunteering for a trial means volunteering to receive the vaccine or other intervention being tested \u2014 or to be in the control group that doesn\u2019t get the real thing. The choice isn\u2019t up to you.<\/span><\/p>\n

Participants in drug trials don\u2019t know if they receive the intervention or the placebo. In some trials, the researchers don\u2019t know either. These are called double-blind trials, and they’re considered the gold standard in clinical research because they’re unlikely to produce biased results.\u00a0<\/span><\/p>\n

“Having people stay in our boring and uninteresting control groups is more important, scientifically, than anything.\u201d<\/p><\/blockquote>\n

Some studies, like the COVID mental health trial I did, don\u2019t lend themselves to blinding. In that case, the intervention group got daily text messages from researchers (sent with the goal of improving participants\u2019 mental health and relationship quality) and the control group got nothing, so I knew right away I was in the latter. Sometimes, for behavioral interventions, the control group gets the standard treatment for a condition instead of the experimental one. But there\u2019s no way to create a \u201cplacebo\u201d text message or psychotherapy session.\u00a0<\/span><\/p>\n

I stuck with the trial until it ended, even though it would have been more interesting to get the intervention. Some people quit when they discover they\u2019re controls. But if you\u2019re participating for the greater good, don’t be a fairweather study subject.\u00a0<\/span><\/p>\n

\u201cIt\u2019s easy to keep people in the intervention, because they got what they were hoping for,\u201d Kanter says.\u00a0<\/span><\/p>\n

\u201c[When some people] realize that they didn\u2019t get the intervention, they drop out, and that really hurts our science. Having people stay in our boring and uninteresting control groups is more important, scientifically, than anything.\u201d<\/span><\/p>\n

\n

Ready to book a doctor’s appointment? Visit Zocdoc.<\/span><\/a><\/span><\/h1>\n","protected":false},"excerpt":{"rendered":"

I\u2019ve been a lab rat 4 times and counting. Here are 7 things to keep in mind.<\/p>\n","protected":false},"author":50,"featured_media":18840,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[227],"tags":[159,132,160],"class_list":["post-18837","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guides","tag-clinical-trials","tag-research","tag-volunteering","reviewer-dr-nassim-assefi"],"yoast_head":"\nShould You Volunteer for a COVID Clinical Trial?\u00a0 - Guides<\/title>\n<meta name=\"description\" content=\"I\u2019ve been a lab rat 4 times and counting. 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