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.”

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.

 

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 jchambers@ciscrp.org or Ellyn Getz, Associate Director, Development & Community Engagement, at ellyngetz@ciscrp.org.

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.

ABOUT CISCRP:

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 www.CISCRP.org .

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

Phone: 617-725-2750 ext. 202

www.CISCRP.org

 

Retention Strategies for Keeping Participants Engaged

The Michael J. Fox Foundation for Parkinson’s Research (MJFF) aims to speed clinical research by removing obstacles that stand in the way of drug development. In pursuit of this mission, the Foundation gathers insights from a wide range of stakeholders and uses these perspectives to enhance clinical trial processes from start to finish. In Applied Clinical Trials’ Eye on Patient Advocacy series, we will share best practices and lessons learned from the field of Parkinson’s research that can be applied to clinical trials across disease states. In our fourth column in this series, we explore retention strategies used in a landmark longitudinal Parkinson’s disease (PD) study.

To complete a study, it is critical to retain study participants. Participant attrition has the potential to interfere with the scientific validity of a study and distort data designed to measure drug efficacy and safety. According to Forte Research:1

  • Eighty-five percent of clinical trials fail to retain enough participants.
  • The average dropout rate across all clinical trials is 30%.

Patient retention is an important element of the Parkinson’s Progression Markers Initiative (PPMI), a landmark, longitudinal, observational study sponsored by The Michael J. Fox Foundation. PPMI (ppmi-info.org) aims to find reliable and consistent biomarkers for PD progression by studying cohorts of Parkinson’s patients (de novo idiopathic PD and PD-manifesting genetic mutation carriers), populations at risk for PD (non-manifesting genetic mutation carriers and subjects at risk due to REM sleep behavior disorder or hyposmia), and controls without PD.

Participants in PPMI commit to long-term participation, providing biospecimens (e.g., blood, urine, spinal fluid), and undergoing multiple neuroimaging, clinical and behavioral procedures, and assessments over a period of at least five years.

The study launched in 2010, and since then, approximately 1,500 individuals have enrolled. PPMI’s retention rate has consistently held strong, year after year, at about 86%.

To ensure steady participation and to prevent attrition, PPMI weaves together four key tenets of retention, cultivated and refined since study launch: 1) facilitate participation; 2) communicate study progress; 3) express appreciation; and 4) inform participants of study results.

Facilitate participation through travel concierge services, reimbursement, and remote visits. PPMI study leadership prioritized and simplified long-term participation in large part because individuals carrying specific PD-linked genetic mutations live across a wide geographical area. To facilitate volunteers’ continued participation, PPMI cultivated a boutique experience for them and their care partners. Prospective and enrolled PPMI participants are given the option for complimentary roundtrip transportation between their home and appointments at two “super sites” that have the capacity to handle a high volume of study volunteers.

A third-party vendor manages all logistical planning, including participants’ accommodations, meals, and travel to and from study visits. This door-to-door service reflects the value PPMI study leadership puts on participation and participants. For participants who choose not to travel to a super site, travel and hotel expenses are reimbursed through Greenphire/ClinCard. PPMI leadership is always looking for ways to reduce participant burden and is currently exploring the possibility of remote (video and enhanced phone) and home visits.

Communicate study progress through newsletters, update calls, and a centralized webpage. Reminding participants of the bigger picture is a meaningful way to engage them in the collective success of a study. According to a 2017 report by The Center for Information and Study on Clinical Research Participation,2 the number one reason individuals choose to participate in clinical research is to help advance science or the treatment of a disease or condition. Given this initial motivation, updates on study progress and contributions to the field will facilitate continued engagement. In PPMI, study progress is communicated in several ways:

  • PPMI newsletters provide high-level updates on the study (e.g., study enrollment progress, how the data and samples collected are being used for research) as well as interviews or profiles of study participants and/or study staff.
  • PPMI update calls, which are scheduled throughout the year, feature presentations and Q&A sessions with study researchers and study team members.
  • A PPMI participant webpage allows centralized access to digital versions of the participant newsletters and recordings of study update calls.
  • PPMI blog provides regular news about the study, including recent findings that have emerged from the data.

Express appreciation through a thank-you booklet. Letters from members of the Parkinson’s community, researchers, MJFF staff, statisticians, and study coordinators were published in a print and digital booklet to thank and honor volunteers for their participation. Collecting the personal reflections of the many individuals involved in or impacted by PPMI is a meaningful way to empower participants and remind them of the larger cause they are tied to.

Inform participants of study results through newsletters, update calls, and a webpage. The majority of study volunteers (90%) want to receive results from the clinical trial in which they participated.3 Because there is ongoing analysis of PPMI data and continued follow up of participants, study results are shared on a rolling basis. Using familiar channels to communicate study progress is a great way to close the loop with study participants.

Putting it all together: Host an event

PPMI staff and study leadership also show their commitment to the study’s success, and their appreciation for participants, by hosting annual study update luncheons and dinners that incorporate all the tenets of retention. Having an in-person get together gives participants the chance to meet other volunteers and share experiences of living with PD and taking part in PPMI. During these events, local site staff present study progress and provide relevant results from ongoing data analysis. Michael J. Fox Foundation staff also attend and, together, all study stakeholders thank participants for their time and commitment.

Data used in the preparation of this article were obtained from the Parkinson’s Progression Markers Initiative (PPMI) database (www.ppmi-info.org/data). For up-to-date information on the study, visit www.ppmi-info.org.

PPMI—a public-private partnership—is funded by The Michael J. Fox Foundation for Parkinson’s Research and funding partners, including AbbVie, Allergan, Avid Radiopharmaceuticals, Biogen, BioLegend, Bristol-Myers Squibb, Celgene, Denali, GE Healthcare, Genentech, GlaxoSmithKline, Lilly, Lundbeck, Merck & Co., Meso Scale Discovery, Pfizer, Piramal, Prevail Therapeutics, Roche, Sanofi Genzyme, Servier, Takeda, Teva, UCB, Verily, and Voyager Therapeutics.

References

  1. Lopienski, Kristina. “Retention in Clinical Trials – Keeping Patients on Protocols.” Forte Research. June 1, 2015. https://forteresearch.com/news/infographic/infographic-retention-in-clin…
  2. The Center for Information and Study on Clinical Research Participation (CISCRP). “2017 Perceptions & Insights Study: Public and Patient Perceptions of Clinical Research.” https://www.ciscrp.org/wp-content/uploads/2019/06/2017-CISCRP-Perception…
  3. Getz, Kenneth. “Events That Have Shaped Study Participant Protection.” The Gift of Participation: a Guide to Making Informed Decisions about Volunteering for a Clinical Trial, 2nd ed., CISCRP, Center for Information & Study On Clinical Research Participation, 2014, pp. 158–158.

James Gibaldi, MS, Associate Director; and Bernadette Siddiqi, MA, Associate Director; both with The Michael J. Fox Foundation in New York, NY. To contact the MJFF Recruitment and Retention Team, email: trialsupport@michaeljfox.org

MJFF would like to acknowledge the following individuals for their contribution to the research presented in this case study: Vanessa Arnedo, MPH, Sarah Berk, MPH, Sohini Chowdhury, MA, Tara Hastings, MA, Catherine M. Kopil, PhD, and Alyssa Reimer.

Announcing The Gift of Participation, 3rd edition, the Ultimate Guidebook on Clinical Research Participation

The Gift of Participation, 3rd edition, written by Ken Getz, Founder of CISCRP, is now available. The book is a comprehensive, easy-to-read guide for patients and caregivers seeking information about the clinical research process.

The Center for Information and Study on Clinical Research Participation (CISCRP) is pleased to announce the release of the third edition of The Gift of Participation. Written by CISCRP Founder, Ken Getz, the book is a comprehensive, easy-to-read guide for patients, caregivers and families to navigate the clinical research process. The new edition offers a fresh look at why participation in clinical research matters. The book features important updates on core information and new areas including the role of social and digital media in clinical research, the collection of bio-marker data and generic materials, evolving rules on clinical trial results disclosure, and more.

Clinical trials are essential to public health. Behind every medicine and treatment available are clinical trials and volunteers who sacrificed their time. Author Ken Getz notes, “For the majority of people, the idea of clinical trials is a new and unfamiliar one. Most people first learn of them at the same time they are diagnosed with a serious illness for which no medication is available or adequate. This rush to navigate the unfamiliar terrain of clinical trials is often overwhelming and confusing.”

According to CISCRP’s 2017 Perceptions and Insights Study, a majority of the public, close to 70%, has never or rarely considered clinical studies as an option when discussing treatment or medication options with their doctor. This may come as a result of common myths about clinical research. The nonprofit CISCRP strives to debunk these myths and help patients and their caregivers understand the clinical research process and what it means to be a clinical research participant.

For many patients, clinical trials can be life changing due to the access participants gain to cutting-edge research and expert medical care. Clinical trial participant Meisha Brown was involved in clinical trials from the time she was 8 years old for Burkitt lymphoma. In the book’s foreword she shares, “An opportunity to participate in a clinical trial offered me a beam of hope and gave me a fighting chance when the state of affairs was seemingly hopeless.”

To order a copy of The Gift of Participation, visit CISCRP’s online store at https://ciscrp-educational-resource-store.myshopify.com/. All proceeds are donated to CISCRP and supports the educational initiatives to assist those seeking to learn more about volunteering in clinical trials.

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 offers free education and outreach to the general public and patient communities. Visit http://www.CISCRP.org for more information or to support CISCRP’s educational initiatives.

CISCRP Invites Atlanta Community Members to Free Health Event

On Thursday, September 26, CISCRP will host AWARE for All, a free health event, for the Atlanta community. To learn more and reserve your spot for this event visit awareforall.org or call 1-877-MED-HERO (1-877-633-4376).

The Center for Information and Study on Clinical Research Participation (CISCRP) invites the Atlanta community to attend AWARE for All, a free health event on Thursday, September 26, from 5:00 p.m. – 8:00 p.m. EST. CISCRP’s AWARE for All is a program that has been hosted in over 60 communities around the world since 2003. This unique program enables the public to learn about the clinical research process and how it plays into public health.

This will be the first AWARE for All event the nonprofit has held in Georgia. CISCRP’s Associate Director of Development & Community Engagement, Ellyn Getz, notes, “We are excited to bring our internationally-recognized program to the Atlanta community and are thankful for the support we have received from many local organizations. AWARE for All events provide a unique opportunity for the public to interact with professionals in the clinical research field and gather the information they need to make informed decisions about their health.”

CISCRP will be providing free dinner and refreshments. Attendees will have access to several free health screenings including Breast Health, Blood Pressure, Depression, Diabetes, Eating Disorder, Flu Vaccinations, HIV, Memory, Nutrition Counseling, Sickle Cell, Smoking Cessation Counseling, and Vision. Local health advocates and researchers will be in attendance to share their resources and services. There will also be an overview presentation about clinical research and a panel discussion featuring research professionals and study participants.

CISCRP is producing the event in collaboration with Biogen and National Sponsor, Lupus Research Alliance (LRA). The LRA National Director of Advocacy and Programs, Diane Gross, MPH comments, “Lupus Research Alliance is proud to continue our support for an event that aims to improve awareness about clinical research, particularly among minority and underserved communities. This is an important chance for the Atlanta community to come together to address the need for greater education and to recognize those who take part in clinical research studies.”

AWARE for All – Atlanta will be held on Thursday, September 26, 2019 from 5:00 p.m. – 8:00 p.m. EST at the Ivy Community Center, 3850 Stone Road SW Atlanta, GA 30331. Attendance is free, but please reserve your spot today by visiting http://www.awareforall.org or by calling toll free 1-877-MED-HERO (1-877-633-4376).

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 http://www.CISCRP.org for more information or to support CISCRP’s educational initiatives.

Editor’s Note:
Community and research collaborators include: ACRP, Alpha Kappa Alpha Society, Alzheimer’s Association, ARCH, Arthritis Foundation, Biogen, Black Nurses Rock, BrightFocus, Cancer Support Community Atlanta, Clinical Research Atlanta, Cogniciti, Emory Goizueta Alzheimer’s Disease Research Center, Georgia Ovarian Cancer Alliance, HEAL, iResearch Atlanta, the Ivy Community Foundation, the Lupus Research Alliance, Morehouse School of Medicine, Multiple Sclerosis Center of Atlanta (MSCA), and Walgreens.

Plain Language for Health Workshop

Join Behtash Bahador, CISCRP’s Senior Manager of Quality and Compliance and Tufts Alumni, at the Plain Language for Health workshop at Tufts University School of Medicine. Behtash will be participating in a panel discussion on day one of this Writing and Design Workshop for Health Research and Practice for community engagement.

When: March 28 – 29, 2019
Where: Tufts University School of Medicine (Boston, MA)
Link to Register: http://go.tufts.edu/plainlanguageforhealth

More Information About the Program:

The program features experts in health literacy and plain language, interactive peer-learning, and an evening Networking event sponsored by CommunicateHealth. Participants will learn actionable plain language skills and techniques to improve community engagement, trust and transparency, and overall connection with patients, research participants, and the public. It is also an opportunity for people with diverse perspectives, including research teams and participants, librarians, public health professionals, health communicators, community members and others to talk about how to communicate complex health research and practice concepts in ways people can understand. Learn new skills, gain valuable tools, and make lasting connections. For more information visit http://go.tufts.edu/plainlanguageforhealth or email Phil Oettgen, Project Manager, coettgen@tuftsmedicalcenter.org.