Clinical Trials Explained, Research Participants Honored

AWARE for All Event Shares How COVID-19 Pandemic is Affecting Clinical Research

RALEIGH, N.C. (OCTOBER 5, 2020) — The Center for Information and Study on Clinical Research Participation (CISCRP) hosted its AWARE for All – Raleigh virtual community event on October 22. Hundreds of individuals attended to ask questions and to learn about the clinical research process and the role it plays in developing new treatments, vaccines, and devices. This free online event brought clinical research education directly to patients and the public and featured North Carolina-based study participants, research professionals, advocates, and industry stakeholders.

The AWARE for All – Raleigh event featured an overview presentation followed by a facilitated lively conversation with patients and health professionals, virtual health exercises—a Shibashi movement exercise and a lung cancer risk assessment; and a virtual health fair with exhibits from local Raleigh-area health and wellness organizations. The event was organized by the Center for Information and Study on Clinical Research Participation (CISCRP), a leading non-profit dedicated to educating the general public and patient communities about clinical participation. It was the organization’s third virtual event since the start of the global health pandemic in March.

Stefanie Belanger, Assistant Director of Clinical Research Operations at the Clinical Protocol Office of the UNC Lineberger Comprehensive Cancer Center presented an overview of clinical research. Clinical trials are carefully designed research studies in human volunteers to answer specific health questions. They are the fastest and safest way to find treatments that work in people and ways to improve public health.  Often a clinical trial is used to learn if a new treatment is more effective and/or has less harmful side effects than the standard treatment.

The event featured a facilitated conversation with study volunteer Tomma Hargraves; 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. CISCRP Founder and Board Chair Ken Getz moderated the discussion. Attendees asked a variety of questions to the patients and health care professionals to answer, making the discussion more interactive, lively and informative.

Hargraves credits her participation in a clinical trial with surviving Stage 3 lung cancer 14 years ago. Since then, she has participated in other clinical trials and serves as a patient liaison helping others navigate clinical trials.

The COVID-19 pandemic has impacted clinical trials positively in general, the panel agreed. 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.

“Remote visits, online diaries and medication delivery make it easier for patients to stay safe and continue to participate,” said Parikh. “It has become more convenient for people from rural communities to participate.”

Rothman said increased patient participation and access to clinical trials is critical. “We need data that is representative of the entire population,” he said. “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.”

As part of this online educational clinical research program, attendees had the opportunity to visit over 20 local health and wellness organizations in the virtual health fair and access educational materials and read Medical Hero articles – https://www.ciscrp.org/events/aware-raleigh-virtual-health-fair/  Organizations include Duke Health, Hemophilia of NC, Parkinson’s Association of the Carolinas, LGBT Center of Raleigh, Ronald McDonald House of Chapel Hill, and many more. The Raleigh virtual health fair remains open.

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. Contact CISCRP at 1-877-MED-HERO or www.ciscrp.org to learn more about CISCRP’s mission, ‘education before participation.’

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.  Additional clinical research videos are also available to watch.

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. 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.

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