Press Release: CISCRP Receives Innovation Award from FDA’s Office of Minority Health and Health Equity for Research Project on Pilot Mobile Community Engagement Initiative

Initiative Aims to Bring Clinical Research Education and Resources to Medically Underserved Communities

BOSTON, MA — The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to educating and informing the public about the clinical research process, has received a new award from the Food and Drug Administration’s Office of Minority Health and Health Equity (FDA OMHHE).  The OMHHE innovation award will fund a grassroots pilot research project titled “Evaluating Impact of Mobile Community Education Engagement Initiative on Perceptions and Behaviors Related to Clinical Research Among Underserved Populations,”  designed to offer and integrate educational programming and resources about clinical research into the heart of select underserved communities nationwide.

“We are excited to collaborate with CISCRP on this important pilot research project that meets communities where they are, so that everyone has an opportunity to learn and become more informed about clinical research,” said RDML Richardae Araojo, FDA Associate Commissioner for Minority Health and OMHHE Director.

Empirical research in peer-reviewed literature indicates that there has been underrepresentation of racial and ethnic minority populations in clinical trials conducted during the past two decades. Research also shows that low levels of awareness, lack of trust, and poor access to clinical trials are among the top causes of these disparities.

The research project hopes to identify practices that address these issues of underrepresentation through a coordinated, grassroots mobile community education and engagement campaign. CISCRP – in partnership with patient communities and health literacy experts – will develop an educational exhibit within a mobile RV, train local community liaisons and educators, and visit health and cultural activities in select urban centers in the U.S. Throughout the initiative, CISCRP will assess and report on the program’s impact and lessons learned.

“Our mission is to educate and engage with the public and patient communities where they live and learn, and to do so in collaboration with key individuals who reflect the communities,” said Ken Getz, CISCRP Founder and Board Chair. “We are very excited about this pilot project and, at its conclusion, hope to expand its scope nationwide.”

CISCRP has 20 years of experience developing and bringing award-winning grassroots clinical research education through the Journey to Better Health | AWARE for All program, and provides accessible, high-quality education and advocacy to the public and to patient communities.

About CISCRP

The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) nonprofit organization dedicated to educating and engaging the public and patients as partners in the clinical research process. CISCRP provides free education, resources, and advocacy services to patients and the public. Visit www.ciscrp.org for more information. For additional questions about the mobile community engagement initiative, please contact Joan Chambers, jchambers@ciscrp.org, or Lindsey Elliott, lelliott@ciscrp.org.


To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Volunteer opportunities with CISCRP, visit our Volunteer page

Press Release: Center for Information and Study on Clinical Research Participation Receives National Award from Health Industry Leaders

Healthcare Leadership Council Honors CISCRP for Promoting Engagement and Partnership Between Clinical Research Professionals, Patients, and the Public

CAMBRIDGE, MA – The Healthcare Leadership Council (HLC) honored the Center for Information and Study on Clinical Research Participation (CISCRP) with its Redefining American Healthcare Award at a ceremony in Cambridge on Monday, June 6. The event was hosted by BMS, a collaborator of CISCRP’s.

 

The Center for Information and Study on Clinical Research Participation is a non-profit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. Its vision is to educate and empower patients and the public to be viewed and engaged as partners in clinical research.

 

Healthcare Leadership Council executive vice president, Michael Freeman, praised CISCRP for its impact on clinical trial diversity. “Having a deep understanding of what information influences the decision to participate in a clinical trial has enabled CISCRP to address concerns and make the public feel heard. The multi-pronged approach this group has taken to strategically improve health literacy in targeted communities while working to build trust in the process, has resulted in greater diversity in participation of clinical research trials.”

 

“CISCRP is truly a pioneer and a leader, bringing together stakeholders across the clinical trial universe to help us improve the accessibility and experience for patients. You have been at the forefront of promoting the importance of diversity. When the pandemic hit, it was CISCRP who was the very first organization to reach out about what this means from the diversity perspective,” stated Richard Campbell, Vice President of Global Clinical Trial Planning & Alliance Management at BMS,

 

“We are thrilled to be receiving this award,” said Ken Getz, CISCRP Founder and Board Chair. “It is an honor to join such a notable community of past awardees, each of them passionate and committed to educating patients and the public, improving access to care, and engaging with patients and their families as valued partners in clinical research and clinical care.”

 

Assistant Speaker of the House Katherine Clark, provided a recording to congratulate CISCRP for receiving the award. “CISCRP is improving outcomes for individual patients as well as research and participation for years to come….Your dedication to patient outreach and education has improved countless lives, and on behalf of my colleagues in Congress, I thank you for your contribution to our nation’s health.”

 

Another collaborator of CISCRP, Jonathan Jackson, Executive Director of the CARE Research Center at Massachusetts General Hospital and Harvard Medical School, shared with the audience, “The best group in town for healthcare education and patient engagement is also the best group in the nation when it comes to this work….The secret to this approach is ensuring that every patient and participant irrespective of their background or history with clinical research has an opportunity to be fully empowered in navigating clinical trials….To Ken and to CISCRP, congratulations on recognition of your decades of engagement work.”

 

The Healthcare Leadership Council created the Redefining American Healthcare Award to recognize best practices and programs in communities and organizations across the nation that optimize care for vulnerable patients. Award recipients are organizations developing and activating cost-effective, measurable community programs promoting a patient-centered approach to care that considers outside social factors to achieve the best outcomes.

A link to the recording of the ceremony can be found here: https://vimeo.com/user38481162/review/717969368/393f250f1f

Press Release: From Subject to Partner Publication

CISCRP Launches New Publication Marking the 20th Anniversary of TIME Magazine’s Clinical Research Issue and Commemorating the Patient Engagement Movement

BOSTON, MA, April 25, 2022 – The Center for Information and Study on Clinical Research Participation (CISCRP), announces that it has produced and launched a special publication – ‘How Clinical Research is Engaging with Millions of us as Partners in Advancing Medicine.’ The publication marks the 20th anniversary of TIME Magazine’s article – ‘How Medical Testing has Turned Millions of Us into HUMAN GUINEA PIGS’, and celebrates progress made by patient communities and the public through two decades of engagement with the clinical research community. 

“The April 2002 TIME magazine issue was an inflection point denoting more rapid adoption of patient–centric practices in clinical research,” said Ken Getz, Founder of CISCRP and Executive Director and Professor at Tufts University School of Medicine. “It was also the impetus for CISCRP, a unique nonprofit education and advocacy organization whose mission is to inform and engage patients and the public around the world as partners in clinical research.” 

The main story in the commemorative publication, written by an award-winning journalist, spotlights a variety of initiatives that have been implemented to amplify patient voices and needs, educate the public, improve transparency and disclosure, enrich the clinical trial participation experience, and promote collaboration between patients and clinical research professionals. Among the initiatives spotlighted: virtual and remote technologies improving participation convenience and data collection, the return of plain language clinical trial results, and patient input panels informing protocol design. The publication also unveils a new cover graphic designed by the creative team at global agency RAPP and is intended to replace and rebrand the image of patients and the public as central and essential collaborators in the clinical research process. 

“You can’t speak for someone with a rare disease unless you’ve really been with them through it and been a part of it,” noted Julie Breneiser, who was diagnosed with Gorlin Syndrome (a rare genetic disorder) and serves as Executive Director of the Gorlin Syndrome Alliance. 

“The burden of a clinical trial has to be balanced against the patient’s experience living with a disease or condition,” explained Kim Down, National Institute for Health Research (NIHR). 

The commemorative publication is available for download free of charge at www.from-subject-to-partner.org  and print copies are available upon request. 

Press Release – AWARE for All – Southwest

CISCRP Announces - AWARE For All - Southwest- A Free Health Education Forum On Clinical Research This October

Healthcare Consortium Steps Up Efforts to Reduce Health Disparities in Clinical Trials and Increase Demographic Diversity to Aid Research, Treatments in the Wake of COVID-19.

BOSTON, MA, September 27, 2021 – The Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process, announced today its AWARE for All – Southwest Forum. This is a free virtual event that is open to the public and will be held Thursday, October 21st from 6-7pm MDT. The forum is tailored for the Southwest region, including Arizona, California, Colorado, Nevada, and Texas via a secure online platform.

In an effort to reduce health disparities and increase demographic diversity in clinical trials, the forum brings together a unique consortium of health educators, health experts, and trial participants who will share the benefits, research and  urgent need in the development of treatments in healthcare. To register for the October 21st Southwest event visit: https://www.ciscrp.org/event/aware-for-all-southwest-virtual-event/. 

The COVID-19 pandemic and the disproportionate impacts to communities of racial and ethnic minorities, combined with decades of distrust and misinformation about clinical research and its role in the development of treatments and healthcare, has raised the urgency to broaden outreach to reach more participants in clinical trials. The AWARE for All forum aims to increase participation by historically marginalized communities that have long been absent from research on treatments, vaccines, devices, and therapeutic drugs.

“Today, participation by Hispanic communities in clinical trials is less than one percent nationally. Our goal is to increase the participation of patients of Hispanic heritage nationally in clinical trials to find new cures and innovative strategies in treatment. That’s why collaboration, outreach, and participation in the October event to learn more is so vitally important,” said Lisa Treviño, PhD, Vice President, DHR Health Institute for Research and Development.

AWARE for All – Southwest is supported by local research teams, advocacy groups, and a consortium of biopharmaceutical and service provider companies. The program will answer key questions about the clinical trials process, what to expect as a study volunteer, and the benefits and risks of participation. The panel discussion will be moderated by Ken Getz, founder and board chair at CISCRP and includes perspectives from clinical trial participants and healthcare professionals featuring:

  •  Charlene Upshaw, Breast Cancer clinical trial participant, La Porte, Texas
  •  Carmen White, Director, Multi-Cultural Participant Experience Lead, Pfizer
  • Lisa Treviño, PhD, Vice President, DHR Health Institute for Research and Development
  •  Al-Malik Edwards, Recruitment Specialist, Excell Research
  •  Becky Johnson, Director, Global Diversity & Inclusion in Clinical Trials, IQVIA

The AWARE for All event series has been crucial in driving attention to clinical research via locally common conditions and therapeutic areas, with a goal of reaching a diverse population to advance research and quality of care. It is the fourth of five AWARE for All programs running nationally in 2021.

“We believe that clinical trials are extremely important for moving science and medicine forward, and that they cannot be done without the dedication and commitment of the research participants. This is why it is so important that people interested in participating in a trial know that they have rights as participants and that clinical trials are always voluntary, because we could not do our work without their help,” said Michelle Stocker, Clinical Trial Research and Communications Professional, University of Colorado Alzheimer’s and Cognition Center.

As part of the virtual event, an informational exhibit will feature over 30 organizations sharing resources, a Health & Wellness pavilion, and a theater with short educational videos about clinical trials. Exhibitors include: Pfizer, Biogen, Janssen, Otsuka, IQVIA, CSL Behring, EMD Serono, WCG, Novartis, and Genentech. Visitors can connect with Southwestern and national advocacy organizations such as Alzheimer’s LA, The Chrysalis Initiative, National Ovarian Cancer Coalition, Candlelighters Childhood Cancer Foundation, BreastCancerTrials.org, and many more.

“Without clinical trials, we continue to lag behind in solutions for rare diseases like sickle cell and other diseases. We are grateful to CISCRP for hosting free programs like this to educate our community about clinical studies and their importance. Clinical studies are vital to advance research and quality of care, and we are excited to be a part of the Southwest program,” said Gina Glass, Executive Director Dreamsickle Kids Foundation, SCDAA Nevada Chapter.

To access recorded webinars and Informational Exhibit Centers, including AWARE for All events in 2021 visit www.awareforall.org.

 

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.

Press Release – AWARE for All 2021

Center for Information and Study on Clinical Research Participation (CISCRP) Announces Second Annual AWARE for All 2021 Virtual Event Series

The nonprofit organization aims to boost awareness and interest around clinical trial research through FREE interactive, educational events

BOSTON, MA, March 18, 2021 – Today, the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process, announced the upcoming launch of AWARE for All 2021 – a free virtual event series designed to educate the general public about clinical trial research and participation. In the series’ second year, CISCRP will host five regional AWARE for All 2021 virtual events across the country from April through November 2021, with a focus on engaging diverse communities to ensure representative and inclusive clinical research for the future.

Supported by local research teams, advocacy groups, and members of the AWARE Industry Consortium (AIC), each regional AWARE for All 2021 event will focus on select medical conditions and therapeutic areas including but not limited to COVID-19, cancer, heart disease, diabetes, hypertension, and asthma. The events offer participants a 90-minute user-friendly webinar led by medical professionals, short informational videos to help participants better understand the process and importance of clinical research, facilitated conversations with real patients sharing their experiences with clinical trials, and a five-minute exercise break to help encourage healthy habits.

Attendees are also able to visit an online informational exhibit center, featuring clinical research and healthcare resources that are free to access throughout the event. The informational center for each event will include exhibits presented by AIC members, including Genentech, Janssen, Otsuka, Pfizer, Biogen, IQVIA, Novartis, CSL Behring, EMD Serono, and WCG, in addition to local advocacy organizations. Attendees can expect a “traditional” event booth experience in a digital format, like one-on-one conversations with company representatives, interactive informational collateral, and digital downloads.

“As we head into our second year with AWARE for All 2021, we have been able to expand to even more communities across the U.S., driving attention to clinical research via locally common conditions and therapeutic areas – all of which are currently the focus of clinical research and require a diverse patient population,” said Phyllis Kaplan, senior manager, events and community engagement, CISCRP. “Through this event series, we hope to give participants a front row seat to learn about not only what clinical trials are but also what clinical research could mean for the community as a whole and, potentially, themselves as they pursue the best treatment possible.”

The first event begins in April and will follow the timeline listed:

  • AWARE for All Northeast (Boston, New York, Washington, D.C., Hartford/New Haven, Baltimore), Thursday, April 15, from 4:30 to 6:00 p.m. EDT.
  • AWARE for All Northwest (Seattle, Portland, San Francisco, Boise, Billings), Thursday, May 20, from 4:30 to 6:00 p.m. MDT.
  • AWARE for All Midwest (Chicago, Columbus, Detroit, Indianapolis, Minneapolis), Thursday, July 22, from 4:30 to 6:00 p.m. CDT.
  • AWARE for All Southwest (Los Angeles, Dallas/Houston, Phoenix, Denver, Las Vegas), Thursday, October 21, from 4:30 to 6:00 p.m. MST.
  • AWARE for All Southeast (Nashville, Charleston, Atlanta, Charlotte, Jacksonville), Thursday, November 18, from 4:30 to 6:00 p.m. EST.

“For nearly 20 years, CISCRP’s mission has been to educate individuals on the positive effects clinical research has on patient outcomes, and we’ve found reaching out through thoughtful, community-based efforts like AWARE for All – even amid the pandemic – is where we can make the biggest impact,” said Ken Getz, founder and chairman, CISCRP. “While awareness for clinical research has never been higher, we understand there is still a level of hesitation and lack of clarity among the general public. Now is arguably the most important time in history to educate these communities about the clinical trial process and introduce potential participants to studies that can lead to even more groundbreaking discoveries.”

To learn more about AWARE for All 2021, including community registration information, visit ciscrp.org/events/aware-for-all/aware-for-all-events-2021. Organizations interested in sponsoring the series or exhibiting in the virtual informational exhibit center should contact CISCRP at awareforall@ciscrp.org or 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 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.

Media Contacts:

Jillian Hammell | Crowley Webb for CISCRP

jillian.hammell@crowleywebb.com 

716 856 2932 x237