“Medical Heroes,” Participants in Clinical Trials Honored

AWARE for All Event Shares How Clinical Research Plays into Advancing Public Health

The Center for Information and Study on Clinical Research Participation (CISCRP) hosted its AWARE for All – Philadelphia virtual community event on October 1st. Three-hundred individuals attended to learn more about the clinical research process and the role it plays in developing new treatments and vaccines.  This free event brought clinical research education directly to patients and the public and featured Philadelphia-based study participants, research professionals, advocates, and industry stakeholders.

The AWARE for All online event featured a keynote and overview presentation followed by a panel discussion; virtual health exercises—a Tai Chi guided demonstration and Mindful Meditation; and a virtual health fair with exhibits from local Philadelphia-area health and wellness organizations.

Keynote speaker, Dr. Edith Mitchell, Clinical Professor of Medicine and Medical Oncology; Director of the Center to Eliminate Cancer Disparities; and Associate Director of Diversity Affairs at Sidney Kimmel Cancer Center in Philadelphia described how as a young girl growing up in rural eastern Tennessee she saw her family develop a schedule to personally care for her ill great grandfather because they believed he was more likely to survive under their care than at the local hospital as a Black man. That experience triggered her desire to become a physician and battle medical inequalities.

“Thanks to clinical research volunteers, we are all living longer, healthier lives, but we still need to increase the diversity of those who participate in clinical research,” said Dr. Jonathan Jackson, Ph.D., Director of the Community Access, Recruitment, and Engagement (CARE) Research Center.  “The success of clinical trials also depends on including a diverse and inclusive group of people representative of those who may receive the new therapy if it is approved for use.”

Jackson described the need for increased minority participation in COVID-19 clinical trials in part because the virus has disproportionally impacted minority communities. He also explained that some COVID-19 trials are moving faster than research on other diseases because research done on similar viruses is informing the COVID-19 research.

The COVID-19 pandemic has impacted clinical trials in a variety of ways, but they are generally continuing under new safety protocols to minimize contact and maintain patient and physician safety including in-home, virtual visits and telemedicine appointments.

The panel discussion was led by Ken Getz, founder and board chair of CISCRP.  Study participants and researchers focused on clinical research experiences and misconceptions, health advocacy and equity, and how the pandemic has impacted clinical trials.

During the panel discussion, study volunteers Mary Reppart and Ashley Kulp shared challenges when participating in a clinical trial, but they stated that it has always been worthwhile for them participate. They encouraged prospective study volunteers to be aware of potentially long sessions or treatments and they suggested ways to manage stress and transportation to the clinical trial site. Kulp said receiving her medication mail order and going to a local lab for blood tests has been a huge relief during the pandemic.

Jamie Houde, Senior Manager of Clinical Strategy and Innovation at EMD Serono, a panel member, described how her organization has redesigned its studies to better reflect patient diversity. She said research is a partnership between researchers and patients, and patients should always share ideas or ask questions to better understand the study in which they are participating.

Panel member Andy Lee, SVP Head of Global Clinical Trial Operations at Merck, said he appreciates AWARE for All’s focus on patient education, evaluating the decision to participate, and fully understanding what it means to participate because that underscores the philosophy of clinical research: patient safety is the first tenet of medical research.

“Our medical advances can only happen through the efforts of many people, especially the patients who volunteer for clinical trials. They are our partners in research,” said Lee.

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 research 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 offers a free service designed to help patients and caregivers find clinical trials within their medical condition and location 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:

  • ClinicalTrials.gov is a site maintained by the National Institutes of Health (NIH) that includes trial and enrollment information.

CISCRP recently launched informational videos about the different phases of clinical research participation and highlights 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.

Supporters of the AWARE for All – Philadelphia event include Albert Einstein Healthcare Network, Drexel University College of Medicine, Greenphire, Lazarex Cancer Foundation, National Alliance on Mental Health – Montgomery County chapter, Allergy & Asthma Network, Fox Chase Cancer Center, TREND Community and the AWARE Industry Consortium.

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.

Clinical Research Educational Event for the Raleigh Community on October 22

Free Online Webinar and Health Fair Provides Information about How the Pandemic is Affecting Clinical Research Participation

RALEIGH, NC, October 15, 2020— The nonprofit CISCRP is organizing a free virtual health fair and webinar to educate the public about clinical research participation. This October 22 event from 4-6pm EDT features a five-minute lung cancer risk assessment, a Shibashi movement exercise, a panel discussion with study participants and researchers, and an online virtual reality health fair with educational resources from local health and research organizations.

The AWARE for AllRaleigh program comes at a critically important time when public interest in learning about the process to advance new medical therapies, vaccines, and devices has increased dramatically. In addition, the importance of diversity and inclusion in clinical trials has intensified given the under-representation of minority patients in clinical research and the disproportionately high incidence and severity of COVID-19 cases among minority communities. 

Denise Snyder, Associate Dean for Clinical Research at the Duke University School of Medicine, runs an office that supports central services for Duke University’s clinical research efforts and is in the midst of launching a new community-based health clinic dedicated to clinical research.

“This is a different model for us – to be out of the hospital and into the community. When you’re in the community, it is easier for people to participate in clinical research and we hope it is less intimidating,” says Snyder. “We’re also able to cultivate staff that is representative of the community.”

Community access and transparency is key to participation in clinical research, and so is being able to answer questions and address lingering misconceptions.

“We’re encouraging the general public to attend this important event,” said Joan Chambers, Senior Director at CISCRP. “The online program will answer a lot of key questions about the clinical research process, what to expect as a study participant, and the benefits and risks of participation.”

Stefanie Belanger, Assistant Director of Clinical Research Operations at the Clinical Protocol Office of the UNC Lineberger Comprehensive Cancer Center will give an overview presentation on clinical research. Following will be a panel discussion with study volunteers Tomma Hargraves and Sharon Dula; Pablo Graiver, vice president of patient engagement, IQVIA; Dr. Brian Rothman, associate director at Otsuka Pharmaceutical Companies; Mary Hart, director of research, Allergy & Asthma Network; and Dr. Purvi Parikh, medical director of Allergy & Asthma Associates of Murray Hill. Discussion topics will focus on clinical research, COVID-19 research and lung complications, and respiratory health.

Attendees will have an opportunity to ask questions, participate in two health exercises—Shibashi and a Lung Cancer Risk assessment, and visit a virtual health fair to connect with local and national community health advocates and researchers to learn more about their educational resources.

AWARE for All – Raleigh will be held Thursday, October 22, from 4-6 p.m. EST  Attendance is free, but please reserve your spot today via Eventbrite. To learn more, visit awareforall.org or call 877-633-4376.

The AWARE for All – Raleigh supporters include Allergy & Asthma Network, Brain Injury Association of North Carolina, Debbie’s Dream Foundation, Duke – Office of Clinical Research, Hemophilia of North Carolina, Javara, LGBT Center of Raleigh, Lung Cancer Initiative, Lupus Research Alliance, Parkinson Association of the Carolinas, PRA Health Sciences – Rare Disease Center, Ronald McDonald House of Chapel Hill and the AWARE Industry Consortium.

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.

FREE Online Health Education Program About Clinical Research Set for October 22 in the Raleigh-Durham, NC Community

Increased Diversity and Participation in Clinical Trials Will Help Develop New Treatments and Vaccines

RALEIGH-DURHAM, NC — The Center for Information and Study on Clinical Research Participation (CISCRP) invites the Raleigh-Durham community to attend AWARE for All, a free online educational health event on Thursday, October 22nd, from 4-6pm EDT via a customized, secure online platform.

CISCRP’s AWARE for All – Raleigh-Durham program is supported by local research teams, advocacy groups, and a consortium of pharmaceutical, biotechnology and service provider organizations. The online program offers organizations the opportunity to bring educational health and clinical research information directly to diverse patient communities and the general public.

Around the world, people are living longer, healthier lives thanks to medical advancements and new treatments and drugs.  But that reach could be even greater with increased diversity in clinical research participation.  AWARE for All – Raleigh-Durham’s free online program aims to educate and empower the public in making informed decisions about clinical research, understanding the process, and knowing the questions to ask. For many clinical research participants, the decision to join a study is empowering and a way to take more control of their healthcare.

Paulette McDaniels is a clinical research participant and encourages others to learn as much as they can about a clinical trial before they decide to join. She also says you learn more about your own health and body in a clinical study, and that can help inform the study team. “It’s a team effort. If you aren’t working with your doctors and the team that’s doing the study, nobody is going to get anywhere,” says McDaniels.

The AWARE for All online program on October 22nd, includes a panel discussion with researchers and patients who will share their experiences as clinical trial participants.  Discussion topics will focus on clinical research, health advocacy and equity, COVID-19 research and lung complications, and respiratory health.  Attendees will have an opportunity to ask questions, participate in two health exercises—Shibashi and a Lung Cancer Risk assessment, and visit a virtual health fair to connect with local and national community health advocates and researchers to learn more about their educational resources. A virtual theater will be featuring educational clinical research videos.

Clinical research participant Jim Butler shared his story: he thanks his wife who brought the trial opportunity to his attention and feels it was “an important way to be proactive about his diagnosis.” Jim referred to his research participation as something that he “feels really good about doing and is glad he can contribute to…”

AWARE for All – Raleigh-Durham will be held Thursday, October 22nd, from 4-6pm.  Attendance is free, but please reserve your spot today by clicking here. To learn more, visit awareforall.org or call 877-633-4376.

The AWARE for All – Raleigh-Durham supporters include Allergy & Asthma Network, Brain Injury Association of North Carolina, Debbie’s Dream Foundation, Duke – Office of Clinical Research, Hemophilia of North Carolina, Javara, LGBT Center of Raleigh, Lung Cancer Initiative, Lupus Research Alliance, Parkinson Association of the Carolinas, PRA Health Sciences – Rare Disease Center, Ronald McDonald House of Chapel Hill and the AWARE Industry Consortium.

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.