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.”

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, . 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 or call 617-725-2750 x400.


Engaging Underserved Communities in Clinical Research

by Stephanie Loomer, CISCRP Staff

Originally published in Clinical Leader. See link below for the complete article.

The importance of clinical trial research in developing treatments and advancing healthcare is widely acknowledged. In 2019 alone, 46,391 study volunteers contributed to clinical trials that resulted in the approval of 48 novel drugs. Of the demographic subpopulations represented, 9% of study volunteers were Black/African American, 9% were Asian, and 18% were Hispanic, highlighting a lack of representation of underserved populations.1 Recently, the FDA recommended broadening eligibility criteria to enhance diversity in clinical trials and therefore better reflect the patients who will be using a drug once it is approved.2

Pharmaceutical companies have begun working to address these disparities in clinical trials. For example, companies such as Sanofi and Eli Lilly have partnered with patient organizations and medical associations to better connect with underserved communities.3 When identifying study sites, both companies include geographic locations with diverse populations in their searches.  Furthermore, Eli Lilly requires that at least two sites be in diverse locations for larger research studies.3 These are a few of the ways that companies can engage a more inclusive group of study volunteers and better understand how the drug will impact the broader target patient population upon approval.

To read the article in its entirety, please visit Clinical Leader.

Innovative Partnership Nominated for Citeline Award

CISCRP proudly participated in a 2019 collaboration with Biogen, the National Minority Quality Forum (NMQF), Tufts Center for the Study of Drug Development (CSDD), Langland, H.E.A.L. and the FDA’s Office of Minority Health and Health Equity to engage directly with the general public through grass-roots outreach campaigns and events; to listen to their level of understanding, awareness, and concerns through digital channels, in-person meetings and interviews; and to provide resources to support education about clinical research participation. These efforts proved valuable and impactful, receiving endorsement to continue to build and expand these efforts in 2020 and beyond. This innovative 2019 project has recently been nominated as a finalist in the 2020 Citeline Awards for Medidata Clinical Partnership of the Year.

The team worked to better understand the challenges and barriers encountered by African American and Hispanic/Latinx communities in the US regarding awareness, access to clinical research participation, and health care provider involvement in evaluating research opportunities. 

As a part of this large engagement campaign, Tufts CSDD conducted in-depth interviews among minority physicians, investigators and nurses to explore barriers and challenges to clinical trial access and referral, as well as high incidence of minority investigator drop-out rates. An online social listening campaign was launched to follow conversations and sentiments around clinical trials among African Americans and Hispanic/Latinx communities. CISCRP and the NMQF organized public-facing programs that offered free health screenings and educational sessions. The FDA participated in Biogen’s Patient Engagement Day and spoke to the importance of engaging underrepresented minorities in clinical trials.

Insights obtained from these conversations will assist the team in enhancing current structures and implementing new efforts to increase access to clinical trial sites and site participation in clinical trials. Feedback provided by online social listening and healthcare providers reinforced existing barriers to clinical research participation for members of diverse communities.

“While the public continues to acknowledge the importance of clinical research in identifying new medicines, general awareness and participation in clinical research studies remain low for a variety of reasons, and minority populations continue to be underrepresented in clinical trials,” said Ellyn Getz, Associate Director, Development and Community Engagement for CISCRP. “Many learnings from this year-long program will be applied in 2020 to patient engagement strategies, protocol entry criteria, site selection, and patient outreach.”

In 2019, approximately 2,000 people attended NMFQ’s community health events and CISCRP’s AWARE for All programs and learned about clinical trial participation. Over 500 event attendees surveyed indicated that they are somewhat or very interested and willing to participate in a clinical trial and are eager to participate if invited by their health care provider. This indicates an opportunity to further engage, educate, and connect underrepresented patients with clinical trial site teams.

This innovative collaboration has built a strong foundation for continued grass-roots outreach efforts. Biogen is supporting the AWARE for All: Clinical Research Education event series over the next five years as a member of CISCRP’s AWARE Industry Consortium. The consortium addresses the critical need to improve patient diversity in clinical trials.

For more information, please contact Joan Chambers, CISCRP’s Senior Director, Marketing and Outreach, at or Ellyn Getz, Associate Director, Development & Community Engagement, at

CISCRP Announces 2nd Annual Virtual Fitness Challenge to Recognize Medical Heroes

Encouraging the clinical research community to come together across the globe to honor medical and healthcare professionals, researchers and study volunteers

Boston, MA | April 2, 2020

On April 15, the Center for Information & Study on Clinical Research Participation (CISCRP) will be initiating the 2nd annual Medical Hero Appreci-a-thon to bring the global clinical research community together to express their appreciation for all “Medical Heroes” – medical and healthcare professionals, researchers and study volunteers.  CISCRP invites the public to participate in this free month-long virtual fitness opportunity.

Participants can share the distance they will go to recognize Medical Heroes by tracking any form of exercise—cycling, running, elliptical, weightlifting, sit-ups, yoga, stair climbing, pet-walking and other physical activities—on the Appreci-a-thon portal. Donations received in support of the virtual fitness challenge provide educational programs designed to help patients and their families navigate the clinical research process.

“Last year, nearly 400 people across industry, research, advocacy, and patient communities participated globally in this virtual appreciation event and the spirit of support and teamwork was inspiring,” said event organizer Justine Holleran. “This year we’re hoping to see an even larger community participating in this virtual fitness challenge to raise awareness about clinical research and its importance to public health.”

“Clinical research education and awareness is even more critical today,” added Ellyn Getz, Associate Director, Development and Community Engagement, at CISCRP.  “Medical, healthcare and research professionals are working tirelessly to provide care and treatment. And patients, their families and the public are seeking information and hope. Join us in showing your support and appreciation for the many dedicated ‘Medical Heroes’ around the world by participating in this virtual fitness challenge!”

The Medical Hero Appreci-a-thon virtual fitness challenge officially starts April 15th and runs through May 15th. Participants can register for free at

For additional information, email or visit


The Center for Information and Study on Clinical Research Participation is an award-winning nonprofit organization dedicated to educating and engaging the public, patients, research and health care professionals as partners in the clinical research process. Since 2003, CISCRP has produced numerous educational and awareness-building programs internationally and has developed a large library of print/digital content to increase health literacy.

New Consortium Launched In Partnership with CISCRP to Improve National Clinical Research Literacy

Research in the literature shows that minority communities have a high willingness to participate in clinical trials and high self-reported general knowledge about the clinical research process. Yet, according to a recent study conducted by the Center for the Study of Drug Development at the Tufts University School of Medicine, minority patients – most notably those of Black and African descent– are highly underrepresented in clinical trials of new medical interventions. Tufts research also shows that patient referral rates into clinical trials among practicing minority physicians and nurses are very low.

To address the critical need to improve patient diversity in clinical trials, CISCRP – in partnership with ten leading pharmaceutical companies and clinical research service providers – has launched a new consortium that will focus energy and resources on community-based education during the next five years beginning in early 2020. Consortium members include Merck, IQVIA, Biogen, Otsuka, CSL Behring, Janssen, WCG, Boston Scientific, EMD Serono, and Pfizer. Representatives from each member company will participate on a steering committee and will provide staff and resources to support the planning and execution of live educational events in five targeted urban centers annually.

“This centralized approach is vital to bring together the necessary oversight and infrastructure required to engage with communities from around the country,” said Jonathan Jackson, Ph.D., study volunteer and The Center Director of Community Access, Recruitment, and Engagement (CARE) Research Center at the Massachusetts General Hospital, Harvard Medical School.

The Consortium initiative builds on CISCRP’s 18-year experience producing and hosting internationally recognized live educational events – called AWARE-for-ALL programs — throughout the United States and parts of Europe. Each event engages a local planning committee comprised of members of the public, patients, advocacy groups, health care and clinical research professionals, offers educational presentations and discussions, as well as free health screenings and information about local clinical trial activity. The consortium also plans to mobilize a pop-up educational exhibit in targeted urban health centers to generate excitement and awareness in the weeks leading up to each live event.

“We are thrilled to be working with Consortium members on this important and novel initiative,” said Ellyn Getz, Associate Director of Development & Community Engagement at CISCRP. “Support, input and insight from consortium members presents an unprecedented opportunity to have an even greater impact on advancing public and patient clinical research literacy over a 5-year time period with ongoing continuous improvement,” she added.


The Center for Information and Study on Clinical Research Participation (CISCRP) is an internationally recognized 501(c)(3) non-profit organization dedicated to educating, informing and engaging the public

and patients about clinical research. CISCRP is committed to providing services designed to help professionals best engage patients as partners in the clinical research process. Visit .

Contact Information
Joan A. Chambers
Senior Director, Marketing & Outreach

Phone: 617-725-2750 ext. 202


Letter from the Editor, November 2016

Rachel MinnickThe weather is starting to cool and as fall greets us, it is a wonderful time to reflect on the events of the past year and begin to gear up for new and exciting opportunities ahead. I’d like to introduce myself as the new Editor of the Patients as Partners Newsletter. I’m thrilled to have the opportunity to share exciting news and updates about CISCRP through this platform and want to thank you in advance for your readership.

2016 has been a tremendous year of growth for CISCRP’s educational programs and patient outreach initiatives. Among our many initiatives, a few highlights: We held a record number of AWARE for All events this year, including our first international program in the UK; hosted two Medical Hero Appreciation 5K Events, both of which welcomed over 300 runners/walkers each; co-hosted the first “Inspiring Hope” Ideathon to generate innovative ideas to raise clinical research awareness; conducted thousands of free clinical trial searches for patients; participated in countless speaking engagements, webinars, and symposium; and distributed thousands of educational materials to sites and organizations world-wide.

This year has also seen significant growth in our Communicating Trial Results program and in our Patient Advisory Board services. More and more companies are turning to CISCRP for assistance in improving their patient engagement capabilities.

In 2017, we will be holding AWARE for All events in New Orleans, Seattle, Houston, Jacksonville, and in Manchester, England and Toronto, Canada! Check our upcoming events page for date announcements!
As a final note, I’m delighted to announce that CISCRP is moving! As our organization continues to grow and expand, we are excited to move into a larger office space within the Boston area. The move is planned for early 2017 and we will be sure to share our new address and location with our supporters as soon as the details are finalized.

As I reflect on an exciting year behind and ahead, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators. We are so thankful for your dedication to helping us raise awareness and education around clinical research!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,


Letter from the Editor, March 2017

Rachel Minnick

Dear Readers,

We are well into the New Year and 2017 is shaping up to be an exciting year for CISCRP, our educational programs, and our patient outreach and engagement initiatives.  I have some updates and information to share with you as we look to the year ahead of us.

This quarter’s newsletter will introduce a new “Supporter Spotlight” piece that we will include in each edition moving forward.  This will be an opportunity for us to feature a new CISCRP supporter and highlight their work and successes within the clinical research education and outreach space.  For our first spotlight piece, we are featuring Jennifer Byrne of PMG Research, who has been a long-time supporter of CISCRP.

As always, we have included our Medical Hero Spotlight piece, and this quarter we have the pleasure of introducing you to T.J. Sharpe, a Stage IV melanoma survivor, who shares his experiences with different clinical trials and how they ultimately saved his life.

We are delighted to highlight one of our growing Medical Hero Recognition initiatives, a program that includes publications in major national newspapers and one that helps to recognize and thank study volunteers for their participation in clinical research.

We have also included an article on CISCRP’s role in an exciting and important new grant project being spear-headed by the Lupus Foundation of America.  We are part of a team who is developing a new model for improving minority awareness and participation in lupus clinical trials.  Stay tuned for future updates on this ground-breaking initiative.

Lastly, we have some incredible ideas and options for how our community members and supporters can get more involved with CISCRP, be it through use of our educational materials or through creative ways to engage with us.  We want to work with you, as partners, in providing greater outreach and education to the clinical research community, patients, and the public.

In upcoming events news, CISCRP is gearing up for two Medical Hero 5K Walk/Run events on April 29th in Seattle WA and June 19th in Chicago, IL.  We are also hosting our first AWARE for All Clinical Research Education day of 2017 on May 12th in Houston, TX.   Be sure to check our Upcoming Events page for new AWARE for All city and date announcements, coming soon!

As we gear up for the year, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators.  We are thankful for your dedication to helping us raise awareness about clinical research and the importance of clinical trial participation!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,


CISCRP’s Educational Materials to Promote Greater Literacy and Awareness of Clinical Research

CISCRP’s Educational Center is a free online resource for learning more about clinical research and clinical trial participation.  The education center contains a wealth of information to inform patients and the public about clinical research, including FAQs, interactive videos, volunteer perspectives, charts and statistics, downloadable reference guides, and much more.  We encourage potential study volunteers to spend some time educating themselves about clinical research before making an informed decision to participate.  And we encourage sites and researchers to direct study volunteers to our site to learn more about clinical trial participation and the overall clinical research process.

Our education center is always growing and evolving to ensure that we have relevant and timely information about clinical trials available to patients and the public.  We are pleased to introduce a new set of digital brochures that will soon be available in the Education Center on the topics of “Taking Part in a Clinical Trial” and “Let Us Recognize and Thank Study Volunteers.”  These are intended to help patients and family members become more informed and educated about clinical research.  They can also be used as a reference by sites and research institutions.  These will be available to download so that patients may take them as a reference when speaking to their study staff about a clinical trial or to their doctor about clinical research participation options.  They will also be available in print form through the CISCRP Store.

These new brochures were developed in sponsorship with INC Research; a leading global contract research organization (CRO) (  Christine Phillips, MSc, PhD, Senior Director with INC Research comments, “INC is pleased to work with CISCRP to bring new educational pieces to the CISCRP Education Center and Store.  We plan to use these new brochures at our own sites to give patients access to more information about clinical trial participation and the importance of recognizing study volunteers as “medical heroes.””

CISCRP is pleased to provide these and other valuable resources to patients, family members, and the general public so that potential study volunteers can educated themselves and their support team on the clinical research process.  Providing clinical trial education is key to empowering patients to feel that they are engaged and valued partners in the clinical research process.

All of our educational brochures are available to purchase in print form through the CISCRP Store.  We also offer co-branding options for all of our Store materials for sites or companies who wish to add their logo and contact information to the material.  Contact CISCRP for more information!

We are always looking to expand our library of materials and encourage more companies to reach out to CISCRP to develop new educational materials.  Below is a listing of our current brochures and content.  If your company is interested in sponsoring the development of new content, please contact Rachel Minnick at or 617-725-2750 x330.

Should I Participate
Should My Child Participate
African Americans and Clinical Research
Los Hispanos y la Investigacion Clinica
What is a Placebo and Why Are They Used in Clinical Trials
Debunking Common Myths About Clinical Trials
Taking Part in a Clinical Trial (new Store item)
Let Us Recognize and Thank Study Volunteers (new Store item)

Creative Ways to Support CISCRP

By Ellyn Getz

Our supporters have structured their philanthropic campaigns in many creative ways, from product licenses for educational content to point-of-sale programs where a specific percentage or dollar amount is allocated to CISCRP. We also hold many high-profile special events during the year and welcome business sponsorships.

In 2016, we received many exceptional and unique suggestions that companies implemented as ways to support CISCRP’s educational and outreach initiatives.

Here are just a few ways that a number of members in our Circle of Supporters built support for CISCRP into their budgets and campaigns:

Every Holiday Card Share = Donation to CISCRP
INC Research developed an end-of-year holiday card campaign to spread good cheer…while increasing clinical research literacy in the process. Every time their digital holiday card was shared, INC the donated $1 to CISCRP. Thanks to INC and their supportive community, they generated a $5000 end-of-year donation for CISCRP that will be put towards 2017 education and outreach programs.

INC card


USA Today Editorial Piece: In-Kind Marketing Support
Each year, CISCRP develops a full-page ad to thank study volunteers – Medical Heroes – in a USA Today supplement. In both 2015 and 2016, Praxis has donated in-kind marketing support to develop and publish this important educational content.

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Piggy-Backing a Team-Building Activity, with Free Breakfast & Backpacks for All
DrugDev decided to take their Medical Heroes Appreciation 5K support to the next level in 2016. They exceeded their 100-person goal by inviting all of their employees and their families to participate in the Philadelphia-based 5K. DrugDev welcomed all participants by sponsoring a free breakfast and distributing branded backpacks as part of the 5K give-away packets.



Leveraging Current Marketing Momentum to Build Excitement
The Segal Institute not only shared their excitement to host sponsor an AWARE for All in Miami by sending an army of Segal staff to volunteer onsite at the program, covering parking for all attendees, and sending out a text message to their entire patient database with an invitation to be honored at the upcoming free educational program – they also donated public transit ad space that they normally used to promote their research program for a whole month leading up to the event.

Amplifying the Patient Voice – Hosting Global Road Shows
CISCRP hosts roundtables in the US and Europe to present new data and insights on public and patient attitudes and experiences, and since 2014, Acurian has sponsored 2.5 hour interactive roundtables, open to regionally-located professionals. Recently, Acurian proposed hosting onsite meetings at pharmaceutical company headquarters, as a session during a company-wide conference. The two teams have co-presented to five different companies in the past year, offering robust data analyses and application to aid engagement decisions among clinical operations teams.

Further Incentives to Participate in Online Industry Surveys and Visiting Booth at Conferences
Advanced Clinical conducts a number of industry surveys on innovation and technology. As a further incentive for individuals to participate, Advanced Clinical promotes offering a donation to CISCRP on their behalf. Additionally, Advanced Clinical invites individuals to their exhibit booth at trade conferences and offers to give them a Medical Hero button as well as make a donation to CISCRP on their behalf.

How Can We Count on Your Help and Creativity in the New Year?
CISCRP is looking to connect with new supporters for 2017/2018 patient-engagement initiatives. We have a number of ideas – like hosting a team-building, highly-visible 5K on your company’s campus, sponsoring AWARE for All events abroad, developing new educational content and programs, etc. – and we welcome your creative and innovative ideas as well! To start the process and discuss ways in which your company can support our mission of engaging patients as partners in the clinical research process, please contact or call 617-725-2750 x320. We can’t wait to work with you!