Medical Hero Spotlight: Juana Espino, Motherhood & Cervical Cancer

Juana Espino, her husband and two children were all looking forward to the birth of her third child. Two weeks before her delivery date, Juana started spotting blood. Juana immediately made an appointment with her obstetrician. During the exam, the physician located a mass near her cervix and recommended a biopsy, after the baby’s birth. Juana’s c-section went well and her new daughter was healthy.

But Juana was not.

The results of the biopsy indicated that she had Stage 4 cervical cancer.

“From there, it was just a rollercoaster, at first,” recalled Juana. “I didn’t have health insurance. You always have a pap smear at the beginning of your pregnancy, and mine was normal. The cancer had really grown while I was pregnant, and the doctor was worried about it metastasizing.”

The incidence of cervical cancer complicating pregnancy is low; only about 1% – 3% of woman diagnosed with cervical cancer are pregnant or postpartum when they are diagnosed. (1)

After discussing several options of treatment, Juana’s obstetrician advised that she meet with Dr. Joseph A. Lucci, a board-certified gynecologic oncologist at The University of Texas Health Science Center at Houston (UT Health). Dr. Lucci was also the Principal Investigator of a clinical trial treating Stage 4 cervical cancer. Juana met with Dr. Lucci and learned more about the course of treatment that the trial would include: a hysterectomy, followed by 6 weeks of chemotherapy and radiation.

“The good thing is, I have a big family,” said Juana. “I talked about it with my husband and my 6 sisters went with me to talk with Dr. Lucci about the clinical trial. I am grateful that I had a big support system. I was truly blessed.”

Since Juana was the mother of a newborn, it was decided to delay chemotherapy and radiation for two months. This lead to another difficult decision.

“Because I was having radiation treatment, we decided that my mother would take care of our baby, to be on the safe side,” Juana recounted. (Patients receiving certain types of radiation treatment are advised to limit or avoid contact with children under the age of 18 and pregnant women. (2) “It was hard, to be honest, but  I knew my mother would take good care of her. I did get to see the baby, of course, and when I did, I was really careful. I would dress in layers (because of the radiation) and hold her on a pillow, not directly.”

Juana’s sisters were encouraging when the effects of the radiation treatment became particularly severe during the last part of treatment. “I didn’t feel as sick during chemo as I did during the radiation,” Juana explained. “The radiation was really painful and my sisters kept telling me that I could do it.”

Aileen, Juana’s niece, was also instrumental in supporting her during treatment. “She postponed going to college, to be with me on this journey,” said Juana.

Juana was impressed with the care she received during the clinical trial. “I could call Carole Robazetti (the coordinator) in the middle of the night, and she’d be there. Dr. Lucci was also available at any time to discuss how I was feeling and what was happening,” said Juana. But Juana didn’t discuss one major impact that she experienced, until three years after the trial had concluded.

While participating on a CISCRP Patient Advisory Board, Juana listened to panelists describing the physical and emotional impacts of severe atrophic vaginitis, symptoms that she was experiencing, but never discussed with Dr. Lucci or Carole. (CISCRP Patient Advisory Boards solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study related areas. Learn more here).

“I was afraid to speak up and after I heard the others share their stories, I decided to talk with Carole. She asked me why I hadn’t said anything before, and I just hadn’t felt comfortable.” Juana was prescribed medication that has improved the condition significantly.

The treatments Juana received in the clinical trial eradicated the cervical cancer. Juana and Carole became friends.

“I really wanted to give back somehow, and Carole told me about WOW, the Women Well Program,” said Juana. WOW was founded in 2018, under the umbrella of the Latattore Foundation and the University of Texas. WOW provides pap smears and mammograms at no cost to low-income/uninsured women through monthly community health fairs. Learn more about WOW at https://latattore.com/wow/.

“Members of the Hispanic community don’t always have health insurance, so WOW is helping to save peoples’ lives. I started as a volunteer and now I’m on staff,” said Juana.

Juana says she would participate in a clinical trial again, and that she would be more open to discussing related impacts. “We need to speak and let people know what’s happening,” Juana said.

When asked if she has any words of advice to individuals considering clinical trial participation, Juana advised the following.

“When you’re deciding about a clinical trial, read everything. Read every detail. Those little details will help you decide if you want to be part of it. And get a second opinion before you make your final decision.”

Sources:

(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745864/#:~:text=The%20incidence%20of%20pregnancy%20complicated,the%2012%20months%20after%20delivery.

. (2) https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy)

CISCRP Partners with SubjectWell on Survey

Race and Gender Play Role in Patient Views About Clinical Research During COVID-19 Pandemic

CISCRP partnered with SubjectWell, a patient recruitment firm, polling 553 patients in the United States to review how race and gender impact clinical trial participation, during the COVID-19 pandemic.

Respondents report concerns about being exposed to COVID-19 if enrolled in a clinical trial. By gender, the survey found that men are less hesitant to participate in non-COVID-19 than women. Women place higher values on precautions such as being able to communicate with a study physician remotely. African American patients are more concerned with precautionary measures like limiting the number of site visits and having the ability to send lab samples from home compared to Caucasian patients.

Review the results of the survey on Subjectwell’s website and in an article published on PM360.

For information about collaborating with CISCRP on research initiatives, contact Annick de Bruin, Senior Director, Research Services, at 617-725-2750, extension 400 or at adebruin@ciscrp.org.

 

 

 

 

“Medical Heroes,” Participants in Clinical Trials Honored

Nonprofit Organization Providing Education and Information About Clinical Research Hosts Virtual Educational Event and Recognizes Participants

CHICAGO (August 6, 2020) — Medical heroes. Not just frontline providers, but every day people are medical heroes. That’s how participants of clinical research studies were honored in an innovative, virtual health event held last month.

Called AWARE for All and hosted by the Center for Information and Study on Clinical Research Participation (CISCRP), over 200 people attended the online virtual event for an informative session about the roles each person plays in the clinical research process. CISCRP is the first-of-its-kind organization educating patients, medical providers and researchers, policy makers and others about clinical research.

This event featured a panel of speakers, including patients, researchers, and health professionals; virtual health assessments, including meditation and mindfulness exercises; and, a virtual health fair expo with exhibits from local Chicago-area health and wellness organizations. The panel discussion with patients and researchers focused on clinical research experiences and misconceptions, health advocacy and equity, and how the pandemic has impacted clinical trials. The goal of the event is to educate and empower people to make informed decisions about clinical research participation. 

Paulette McDaniels, a Chicago local, said she participates in clinical trials because as an African American woman, and she thinks it is important to bring parity to health care. She has participated in studies that focus on osteoporosis, asthma and breast cancer research.

“I want to contribute to making health care better for all African Americans,” she said.

Researchers recognize that differences in gender, age, race, ethnicity, socio-economic status, and zip code affect the way people respond to diseases and treatments. For example, Alzheimer’s disease happens twice as often in women than men. Type-2 diabetes and asthma are more common in African Americans. Hispanics, Asian and White women are more likely to develop osteoporosis. Children respond to drugs differently than adults. That’s why scientists need all different types of people to volunteer for research.

Jim Butler started participating in clinical trials five years ago after his Alzheimer’s disease diagnosis.  He saw clinical trial participation as a way to “stay on top of my own diagnosis.”

But it can also be challenging to participate. Butler and McDaniels both described potential frustrations and burdens that prospective trial participants should be aware of: long sessions or treatments, managing stress, and transportation to the clinical trial site location. But for them, the benefits outweigh the challenges.

People participate in clinical research for many different reasons: to advance science and understanding of a disease; to access new, investigational treatments and therapies; to obtain support for their medical care; and to receive compensation are some of the reasons. But for whatever reason one decides to participate, the AWARE for All presenters focused on the choice to participate and what it means to be involved in a study.

“Clinical research education and awareness is even more critical today – especially among diverse, underserved communities,” says Dr. Karriem S. Watson, DHS, MS, MPH, Associate Executive Director, Mile Square Health Center UI Health, Associate Director, Community Outreach and Engagement UI Cancer Center at UIC and the overview presenter at the online AWARE for All event.

Watson said “education before participation” is critical for anyone that considers participating in clinical research, and then once the decision is made to participate, ongoing education and conscious participation is key.

Racquel Bruton and Cassandra Smith, of Biogen and Janssen Research & Development respectively, are both pharmaceutical company executives dedicated to increasing diversity in clinical trial participation. They said it is increasingly critically important for companies to understand how treatments affect specific populations and diversifying clinical research participation will bring about better health care outcomes for everyone.

CISCRP is a non-profit organization dedicated to educating the general population and patient communities about clinical participation. They work with local advocates around the country to plan and host educational events about the clinical trial process. Anyone interested in learning more about participating in clinical trials can obtain information from CISCRP at 1-877-MED-HERO or www.ciscrp.org. CISCRP provides a free search service designed to help patients find clinical trials that might be right for them at www.searchclinicaltrials.org. CISCRP also recommends that individuals consult with a trusted health professional for more information and review key websites devoted to clinical trials:

  • gov is a site maintained by the National Institutes of Health (NIH) that includes trial and enrollment information.
  • gov/COVID-19 is also a site maintained by the NIH listing COVID-19 clinical trials
  • gov is a site managed by the National Cancer Institute
  • org and ResearchMatch.org to learn about clinical trials and connect with study teams.

CISCRP recently launched informational videos about the phases of clinical research participation and why it takes so long to develop new therapies. The first video of the series can be viewed here: https://www.youtube.com/watch?v=iid3BMqopMM.

The AWARE for All – Chicago event planning committee and local supporters included the AWARE Industry Consortium, Peer Plus, Rush Institute for Translational Medicine, Allergy and Asthma Network, Aurora Advocate Health, Chicago Cancer Health Equity Collaborative, Force Medical, Great Lakes Clinical Trials, JDRF, Leukemia & Lymphoma Society, Lupus Society of Illinois, NUCATS, SOAAR/Center for Food Allergy & Asthma Research, Susan G. Komen, and UIC Cancer Center.

About CISCRP

The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. Visit www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact awareforall@ciscrp.org or call 877-633-4376.

Medical Hero Spotlight: Jackie Zimmerman, MS Advocate

Jackie Zimmerman is an accomplished entrepreneur, marketing professional, former roller derby league president, and non-profit founder with a “can-do” energy that is immediately evident when you speak with her. She is also a patient advocate for individuals with multiple sclerosis, receiving the diagnosis during college, at the age of 21. In the face of this world-rocking news, Jackie powerfully pivoted, sharing her story with others and later, becoming a patient participant in clinical research.

“It was a total surprise – no one in my family has it,” Jackie said. “My first question was…am I going to die? I didn’t know anything about MS. And all the patient-facing documentation was targeted at older individuals.”

Jackie found this surprising, particularly when she learned that most patients are diagnosed in their twenties. Her response? It was the mid-2000s, so Jackie turned to one of the newest forms of digital communication, blogging.

“Initially, I started a newsletter and then it became a blog. This was before social media, so blogs were how you connected. Blogging got me on the scene of patient advocacy. There are lots of advocates, now, but then, there weren’t as many,” Jackie explained.

Jackie was diagnosed with relapsing remitting MS which first presented during a flare. At that time, the standard of care was injectable medications.

“Which was really scary at 21 – who likes needles?” Jackie said. “My doctor didn’t provide any guidance. He told me to pick whatever medication I wanted. Today, there are many different options and methods of delivery.”

Another factor complicating the treatment of MS is that in terms of symptoms, prognosis and reactions to medications, no two cases are alike.

Jackie first participated in a clinical trial in 2008 for a MS medication, but being in treatment concurrently for Inflammatory Bowel Disease (IBD) was skewing the results and after a short time, she was asked to withdraw from the clinical study. Over a decade would pass before Jackie would join another clinical trial.

During that time, Jackie founded Girls with Guts, a non-profit to support women living with IBD, and her role as a patient advocate scaled, which led to public speaking engagements as well as work with healthcare and pharmaceutical companies looking to connect with patients.

Two factors steered her back to clinical research as a healthcare option for MS.

“I asked my neurologist questions, because I wanted to keep abreast of things, particularly because I write about them as an advocate,” Jackie said. “Being part of a patient advisory board for a bio-pharma company was also a huge driver. I understand about clinical research participation and what it means. The only factor this second time was a consideration about the time commitment – it’s about a 25-minute drive away. The trial does offer transportation if you need, which I think is awesome, but I don’t need it.”

(COVID-19 has accelerated the adoption of virtual clinical trials and the use of digital devices to monitor patient progress. CISCRP recently conducted a survey on the impact of COVID-19 on clinical research. Access the report here).

When asked about other determinants in her decision-making, Jackie commented “I’m married, so my husband was involved. He said it’s my choice, but I considered him in the process, and all the things you think about when you’re involved in a partnership. I know how to talk with my friends and family about clinical trials to allay their fears. I know how to position it so as not to scare anybody.”

Jackie did not consult any patient advocacy organizations for guidance before participating.

“I’m in the minority here because I know a lot more about clinical trials than the average patient. I knew what questions to ask because I had been on a patient panel and participated in an FDA Patient Advocacy training. I’ve spent a lot of time learning about trials.”

The conversation then turned to what advice Jackie would offer readers considering clinical trial participation.

“Oh man, there’s so much advice,” Jackie replied, laughing. “I have so many angles. Mostly, don’t be afraid of them. It’s not a last resort for MS in terms of treatment. It’s a way to assist your community and get access to medications, years in advance. You’re so heavily monitored that the potential for anything going wrong is quite low.”

Jackie would consider participating in future clinical trials.

“Yes – as long as it fits into my life and it’s not an inconvenience or as long as the potential benefits outweigh the potential inconvenience. I know I have a lot of privilege – I can work from home and make my own schedule. If you’re looking at trials that may not fit into your life, know that there are pharma companies working around participant schedules with office and home visits. If it’s not feasible right now, it doesn’t mean that it will never be feasible.”

CISCRP Licenses Brochures to Ukranian Association for Clinical Research (UACR)

CISCRP recently licensed five brochures for translation into Ukrainian by UACR (Ukrainian Association for Clinical Research) to place on their website as Educational Resources for their members and general public to learn more about clinical research.

Joan Chambers, Senior Director, Marketing and Outreach, explains “CISCRP offers various options to license our educational clinical research content. Dr. Nataliia Marunchyn, Acting Chief Operations Officer of UACR contacted me expressing interest in licensing specific brochures. UACR, a non—profit organization,  is looking to provide patient-facing and easy-to-understand materials through their website.”

Sharing information about clinical trial participation with the general public improves healthcare literacy and empowers individuals to advocate for their health. CISCRP’s brochures and other educational content, available in a wide variety of formats, make resources about clinical research accessible to all.

The brochures licensed to UACR include:

  • Debunking Common Myths About Clinical Trials
  • What is a Placebo and Why Placebos are Used in Clinical Trials
  • Should I Participate
  • Should My Child Participate
  • Taking Part in a Clinical Trial

CISCRP received digital files of the translated brochures.

CISCRP’s catalog of materials includes brochures, flyers, FAQs, patient stories, videos, infographics, books and website content. Learn more about CISCRP’s offerings here.

Unique Free Online Event to Educate Public About Clinical Research Set for July 16

CHICAGO, July 13, 2020 —Following decades of distrust and misinformation about clinical research and its role in the development of treatments and healthcare, a unique consortium of health educators are coming together on July 16 for a free event to educate the public about clinical research participation.

AWARE for All is a free program that aims to educate and empower the public in making informed decisions about clinical research. Led by the nonprofit CISCRP and supported by local research teams, advocacy groups, and a consortium of biopharmaceutical and service provider companies, the free online health education event about clinical research will be held online Thursday, July 16. The event is open to the public and will take place from 4 – 6 p.m. CST via a secure online platform.

This event includes free virtual health assessments, informational presentations that feature community organizations and research centers, local physician and patient speakers, a ceremony to honor clinical research volunteers, and raffle prizes. Participants will hear from a panel of speakers including patients, researchers, and health professionals; participate in virtual health assessments including meditation and mindfulness exercises, virtually visit a health fair expo with exhibits from local Chicago area health and wellness organizations, watch educational videos in the virtual Loop Theater and answer trivia questions to win raffle prizes.

The panel discussion with patients and researchers will focus on clinical research experiences, health advocacy and equity, COVID-19 research, oncology, and cardiovascular health. The goal of the unique event is to educate and empower people to make informed decisions about participating in clinical research opportunities.

“There continues to be a sentiment of distrust in some communities about medical research,” says Rabih Dahdouh, a clinical research associate at the Center for Health Equity Transformation at the Feinberg School of Medicine of Northwestern University, who will join the virtual panel of speakers on July 16. “It is important we expand the conversation about clinical research to include all people.”

Most people who take part in clinical trials are white or Caucasian. Non-white minorities make up less than 10 percent of all clinical trial participants. This is a problem because some minority groups get certain diseases more often. For example, African American men are twice as likely as white men to die from prostate cancer. However, African American men only make up 4 percent of men in prostate cancer clinical trials. Because of this, treatments for prostate cancer may not work as well for African American men.

Dr. Rosalind Ramsey-Gordon, a rheumatologist and health researcher at Northwestern University and a physician specializing in the treatment of lupus sees the impact of disparate research as well. She shares her thoughts on the importance of informing the general public about clinical research and the AWARE for All Chicago virtual event.


Forty-three percent of people with lupus are Black, but only 14 percent of participants in research studies on lupus are Black. Clinical trials not only test drugs and treatments; they also encompass community care education programs and non-drug therapies.


“We know we need to see better communications and culturally appropriate communications to expand the pool of clinical research participants,” says Gordon. “We’ve made a lot of progress in medicine and care over the last thirty years, but we can do better. There continues to be disproportionally higher deaths in communities of color and those can be tackled with increased diversity in study participation.”


Other panel speakers are Steve Satek, President & CEO of Great Lakes Clinical Trials; Paulette McDaniels, study volunteer, Northwestern; Jim Butler, study volunteer, Great Lakes Clinical Trials; and, Racquel Bruton, senior manager, clinical operations, of Biogen, a biotech firm specializing in neurological diseases and volunteers from oncology and lupus studies.

“Clinical trials are pressing forward in the age of COVID-19,” says Satek, a long experienced medical researcher and founder of Great Lakes Clinical Trials, an Andersonville-based firm with a second location in Arlington Heights. “The emergent virus has highlighted the need for new treatments, and it’s time clinical trial participants are recognized as the medical heroes they are.”

Gordon concurs, calling research participants “trailblazers.”


The July 16 virtual event is an opportunity for anyone curious about or considering participating in a clinical research study to learn more. The event includes an online virtual health fair that opened on July 10. Anyone already registered can access the virtual health fair, https://www.ciscrp.org/event/awarechicago2020/, and view educational resources from local health and research organizations including Drugviu, Equal Hope, Georgia Doty Comprehensive Health, Renewed Body Chiropractic & Wellness Center, LLC, Sisters Working It Out, Susan G. Komen, and University of Chicago Comprehensive Cancer Center.

Within the virtual health fair, visitors can navigate from room to room and visit vendor booths within each room. Each organization “booth” features an avatar who answers questions standing before a display board of information. The virtual health fair simulates a live event further with background chatter, individualized avatars, unique booth appearances, and the Loop Theater to watch a selection of clinical research educational videos. It was custom developed for CISCRP for the Chicago event. The Chicago AWARE event is the first one CISCRP has done virtually.


Anyone can register for the free online event on Eventbrite and learn more at awareforall.org or by calling 877-633-4376 toll-free.


The AWARE event planning committee and local supporters include the AWARE Industry Consortium, Peer Plus, Rush Institute for Translational Medicine, Allergy and Asthma Network, Aurora Advocate Health, Chicago Cancer Health Equity Collaborative, Force Medical, Great Lakes Clinical Trials, JDRF, Leukemia & Lymphoma Society, Lupus Society of Illinois, , NUCATS, SOAAR/Center for Food Allergy & Asthma Research, Susan G. Komen, and UIC Cancer Center.


About CISCRP
The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. CISCRP provides free education and outreach to the general public and patient communities. Visit www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact awareforall@ciscrp.org or call 877-633-4376.

CISCRP Launches Public Education Video Campaign on Clinical Trial Participation During the Pandemic

The Center for Information and Study on Clinical Research Participation (CISCRP) announces the launch of a new video series to educate the public and patients about the clinical research process and how it has been impacted by COVID-19. Global surveys conducted between April and June 2020 show that public awareness of clinical trial activity during the pandemic has increased sharply due to increased media attention. At the same time, public knowledge about the clinical research process is limited and public willingness to participate in clinical trials has declined dramatically due to concerns about exposure to the coronavirus. A global study conducted among 500 people this past April, for example, found that only 48% were willing to participate in clinical trials. This compares to 85% who were willing to participate pre-pandemic.

The new educational video series is designed to raise general knowledge about clinical research and to address concerns and questions about participating in clinical trials during the pandemic. The series has been developed in collaboration with patients and professionals. Several major pharmaceutical companies — Takeda, Eli Lilly, Janssen, Biogen, Bristol Myers Squibb, and Merck — also provided educational grants to support development and dissemination of the new programming.

“The pandemic has presented a unique opportunity to provide public education because people around the world are hearing about vaccines and treatments in clinical trials,” said Ellyn Getz, Associate Director, Development and Community Engagement. “We invite and encourage patient advocacy groups, research and health professionals to help disseminate this educational campaign and reach a diverse global audience to raise overall clinical research literacy.”

Each video in the series combines animation and live conversational discussion — in English and eventually in Spanish —with subject matter experts, patients and the public. The first video is already available, provides a general overview of clinical trials and discusses how new treatments and vaccines are developed. A second will explore key principles of all clinical trials and how they are adapting during the pandemic. A third video will examine COVID-19 clinical trials specifically. All of the videos in the series will be made widely available and free-of-charge through mass and social media, advocacy organizations, research centers, and clinical research-related websites. For more information, go to FindingTreatmentsTogether.org.

Medical Hero: Nurse Katie Klatt & COVID-19

At the beginning of the pandemic in mid-March, Katie Klatt, a nurse on a COVID-19 infection control team, received the news that she had contracted the virus herself. “I wasn’t too surprised,” Katie said. “I kind of knew, but the actual confirmation was a little bit scary. It was early on so no one in the US really understood how bad it was.” A healthcare professional, Katie’s background includes working as a PICU nurse and she had just moved to Boston to pursue her Master in Public Health at the Harvard Chan School. Now fully recovered, Katie is a patient participant in a COVID-19 antibody clinical study. This is her story.

Katie contacted her primary care physician when she started having symptoms. “I was treated in two different ways. The first week I was seen via telehealth, and that was literally the same week that so many medical professionals and patients were turning to that option. My doctor was retiring, so I didn’t really have anyone following me. The onus was on me to check in and report my symptoms.” At the end of the first week, Katie was advised to be seen in person, at an urgent care clinic. However, being symptomatic, she could only be seen at the urgent care if she was a previous patient. Being new to the area, this was not the case. Her only other option was to go to an emergency room.

“At first, I didn’t think I was sick enough to go to the ER. I didn’t want to take an Uber and infect anyone else and I was too tired to ride my bike. So I waited until the Tylenol kicked in and walked 40 minutes to the hospital. At the emergency room, they were really well set up. When I walked in, people started to call ‘Rule out!’ which means a COVID-19 patient is entering the area, so people started to move away from me as I passed by. After I was seen, Security escorted me out the back door to protect other patients and staff,” Katie said.

The hospital pharmacy was closed, so Katie was handed a paper prescription to have filled elsewhere. Even though she was wearing a N-95 mask her mother had sent to her a few weeks before she got sick, Katie realized that she should not enter a store. She was also concerned about handing the paper prescription to a pharmacy technician. Katie called a friend who met her at the pharmacy with a clear plastic sandwich bag. She dropped the prescription in it and her friend brought it inside and had it filled.

In addition to having COVID-19, Katie also had a sinus infection. When she was diagnosed, Katie knew what to do. “Stay at home, isolate, hydrate and rest,” Katie stated plainly. “As a healthcare provider, we tend to minimize our own complaints because we’ve seen so much worse, so my view of it was skewed. Having a 103 degree temperature for 10 days, it was almost like I got used to having the chills and feeling exhausted constantly.”

Katie socially isolated from her roommates, staying in her room and only entering the kitchen when they were not present. “I had the presence of mind, despite the high fever, to clean everything I touched – that’s from my nursing background. I’m happy to say my roommates didn’t get the virus.” Family and friends sent care packages and checked in with phone calls and texts which helped buoy Katie’s spirits.

A few days after starting medication, Katie began to rapidly recover. She attributes this, in part, to being a lifelong athlete, playing in Australian and Gaelic football leagues. “When I got COVID-19, I lost about 10 pounds in a week and I lost a lot of my fitness. When my taste started to come back, I was able to eat more and work towards regaining my fitness.”

Katie is using her experience with COVID-19 to assist others. “A friend of mine who is a nurse told me about a clinical study, so I registered for it. The purpose of the study is to monitor levels of COVID-19 antibodies present to see how long they last in a recovered patient’s body. It’s a two-year commitment.”  On a monthly basis, Katie’s blood is drawn and analyzed. Currently, she has not been notified of recent results and she hopes to be informed soon.

In her role as a nurse on the COVID-19 infection control team at Boston Emergency Medical Services, Katie shares her story with EMTs and paramedics who have been exposed to or have contracted the virus while treating and transporting patients. “This is an isolating disease,” Katie explained. “Not having a stigma attached to it is important. It helps them when I explain what I went through when I was sick.”

When asked if she is concerned about contracting COVID-19 again, Katie said “I probably should be. I have reached the same fatigue that everyone in the world has now, around COVID-19. It’s hard to maintain that level of high alert. But I am being careful, more for others than for myself. I wear a mask everywhere, even when I am running outside. I do it because I don’t want anyone else to get it.”

Katie cautions others to be just as vigilant. “Just because we’re opening up, it’s not over. Wear a mask to protect yourself and others. Keep talking about it so that people don’t forget.”

FREE Online Health Education Program About Clinical Research Set for July 16

CHICAGO —A unique clinical research education event produced by the Center for Information and Study on Clinical Research Participation (CISCRP) and supported by local research teams, advocacy groups, and a consortium of pharmaceutical and biotechnology companies will be held on Thursday, July 16. Called “AWARE for All”, the online event is free and open to the public and will take place from 4 – 6 p.m. CST via a customized, secure online platform.


Today, minority populations are under-represented in clinical trials. The FDA recently showcased the demographic characteristics of study volunteers in clinical trials for drugs that gained approval in 2019. Of the 46,391 participants, nine percent of study volunteers were Black/African American, the same percentage were Asian, and 18 percent were Hispanic. This lack of representation results in inequities in our health care system and the effectiveness of new therapies.

“Clinical research education and awareness is even more critical today – especially among diverse, underserved communities,” says Dr. Karriem S. Watson, DHS, MS, MPH, Associate Executive Director, Mile Square Health Center UI Health, Associate Director, Community Outreach and Engagement UI Cancer Center at UIC and the overview presenter at the online AWARE event. “Now is the time to ensure that new therapies are developed that reflect our diverse population here in Chicago. This program is an important way to learn about ways we can all take part – whether that’s through helping to design clinical trials or monitoring the groups that design these studies – or by participating in clinical research as study volunteers. These are all ways to help improve public health and eliminate health disparities.”
This interactive, online program on July 16 features memory exercises and mindful meditation, a panel discussion with patients and researchers that focuses on clinical research experiences, health advocacy and equity, COVID-19 research, oncology, and cardiovascular health; and there will be an online virtual reality exhibit fair launching on July 10 that features educational resources from local health and research organizations.
Anyone can register for the free online event on Eventbrite and learn more at awareforall.org or by calling 877-633-4376.

AWARE event planning committee and local supporters includes the AWARE Industry Consortium, Peer Plus, Rush Institute for Translational Medicine, Allergy and Asthma Network, Aurora Advocate Health, Chicago Cancer Health Equity Collaborative, Equal Hope, Force Medical, Georgia Doty Comprehensive Health, Great Lakes Clinical Trials, JDRF, Leukemia & Lymphoma Society, Lupus Society of Illinois, Northwestern Parkinson’s Disease and Movement Disorders Center, NUCATS, SOAAR/Center for Food Allergy & Asthma Research, Susan G. Komen, UIC Cancer Center and Drugviu.


About CISCRP
The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. CISCRP provides free education and outreach to the general public and patient communities. Visit www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact awareforall@ciscrp.org or call 877-633-4376.

CISCRP Explores the Impact of COVID-19 on Clinical Research

The recent public healthcare crisis has generated an increasing amount of attention on the topic of clinical research.  In light of this, CISCRP conducted a brief survey among the public and patients in April 2020 to assess the impact of the pandemic on clinical research perceptions and experiences. The final report can be accessed here.

Five hundred diverse individuals in the United States and a few select countries in Europe (United Kingdom, France, Germany and Italy) completed the survey. Eighteen percent of the respondents have clinical trial experience. Of those who have participated in clinical research, more than half (56%) are currently enrolled in a clinical trial for COVID-19. Where appropriate, comparisons were made to the baseline 2019 Perceptions & Insights Study, a biennial large-scale global analysis of public and patient views of and experiences with clinical research to identify any notable differences.

Overall, awareness of clinical trials remains low – as 58% had not heard of a COVID-19 clinical research study recently.

“Interestingly, among the minority that had recently heard of a COVID-19 clinical research study in the recruitment phase, we learned that a higher proportion (40%) of Europeans are aware than Americans (34%),” said Annick de Bruin, Director, Research Services. “This contrasts with our larger baseline 2019 Perceptions & Insights Study where we found that North Americans are more likely to be aware of a current clinical trial in general than any other region.  This may partially be due to the fact that the crisis evolved earlier in Europe.”

Misconceptions about the clinical research development process persist.  Most (60%) think a treatment or vaccine for the virus will be developed in less than one year. Once developed, the majority (64%) think it will be less than a year before people can start receiving it.

Patients currently enrolled in ongoing clinical trials for conditions other than COVID-19 report experiencing changes as a result of the pandemic such as telemedicine, study medication delivered to their homes, and the use of smartphone apps. Twenty-six percent report a suspension of the clinical research study in which they were enrolled and 11% report a reduced number of in-person clinic visits.

Top motivators for participating in a COVID-19 clinical research study include altruistic reasons with 46% mentioning ‘to help others who are suffering’ and 46% mentioning ‘to advance science and the treatment of COVID-19.’  These motivations are in line with findings from the larger baseline 2019 Perceptions & Insights Study.

Both the COVID-19 special report, as well as the 2019 baseline reports are available free of charge on the CISCRP website under Research Services, https://www.ciscrp.org/services/research-services/ . CISCRP also presents the aggregate results of the Perceptions and Insights Study at industry conferences, company meetings, and other virtual and in-person forums. For a detailed, in-depth report with a facilitated virtual meeting or webinar, please contact Annick de Bruin at adebruin@ciscrp.org or call 617-725-2750 x400.