Nonprofit Organization Providing Education and Information About Clinical Research Hosts Virtual Educational Event and Recognizes Participants
CHICAGO (August 6, 2020) — Medical heroes. Not just frontline providers, but every day people are medical heroes. That’s how participants of clinical research studies were honored in an innovative, virtual health event held last month.
Called AWARE for All and hosted by the Center for Information and Study on Clinical Research Participation (CISCRP), over 200 people attended the online virtual event for an informative session about the roles each person plays in the clinical research process. CISCRP is the first-of-its-kind organization educating patients, medical providers and researchers, policy makers and others about clinical research.
This event featured a panel of speakers, including patients, researchers, and health professionals; virtual health assessments, including meditation and mindfulness exercises; and, a virtual health fair expo with exhibits from local Chicago-area health and wellness organizations. The panel discussion with patients and researchers focused on clinical research experiences and misconceptions, health advocacy and equity, and how the pandemic has impacted clinical trials. The goal of the event is to educate and empower people to make informed decisions about clinical research participation.
Paulette McDaniels, a Chicago local, said she participates in clinical trials because as an African American woman, and she thinks it is important to bring parity to health care. She has participated in studies that focus on osteoporosis, asthma and breast cancer research.
“I want to contribute to making health care better for all African Americans,” she said.
Researchers recognize that differences in gender, age, race, ethnicity, socio-economic status, and zip code affect the way people respond to diseases and treatments. For example, Alzheimer’s disease happens twice as often in women than men. Type-2 diabetes and asthma are more common in African Americans. Hispanics, Asian and White women are more likely to develop osteoporosis. Children respond to drugs differently than adults. That’s why scientists need all different types of people to volunteer for research.
Jim Butler started participating in clinical trials five years ago after his Alzheimer’s disease diagnosis. He saw clinical trial participation as a way to “stay on top of my own diagnosis.”
But it can also be challenging to participate. Butler and McDaniels both described potential frustrations and burdens that prospective trial participants should be aware of: long sessions or treatments, managing stress, and transportation to the clinical trial site location. But for them, the benefits outweigh the challenges.
People participate in clinical research for many different reasons: to advance science and understanding of a disease; to access new, investigational treatments and therapies; to obtain support for their medical care; and to receive compensation are some of the reasons. But for whatever reason one decides to participate, the AWARE for All presenters focused on the choice to participate and what it means to be involved in a study.
“Clinical research education and awareness is even more critical today – especially among diverse, underserved communities,” says Dr. Karriem S. Watson, DHS, MS, MPH, Associate Executive Director, Mile Square Health Center UI Health, Associate Director, Community Outreach and Engagement UI Cancer Center at UIC and the overview presenter at the online AWARE for All event.
Watson said “education before participation” is critical for anyone that considers participating in clinical research, and then once the decision is made to participate, ongoing education and conscious participation is key.
Racquel Bruton and Cassandra Smith, of Biogen and Janssen Research & Development respectively, are both pharmaceutical company executives dedicated to increasing diversity in clinical trial participation. They said it is increasingly critically important for companies to understand how treatments affect specific populations and diversifying clinical research participation will bring about better health care outcomes for everyone.
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 trial 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 provides a free search service designed to help patients find clinical trials that might be right for them 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:
- gov is a site maintained by the National Institutes of Health (NIH) that includes trial and enrollment information.
- gov/COVID-19 is also a site maintained by the NIH listing COVID-19 clinical trials
- gov is a site managed by the National Cancer Institute
- org and ResearchMatch.org to learn about clinical trials and connect with study teams.
CISCRP recently launched informational videos about the phases of clinical research participation and 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.
The AWARE for All – Chicago event planning committee and local supporters included the AWARE Industry Consortium, Peer Plus, Rush Institute for Translational Medicine, Allergy and Asthma Network, Aurora Advocate Health, Chicago Cancer Health Equity Collaborative, Force Medical, Great Lakes Clinical Trials, JDRF, Leukemia & Lymphoma Society, Lupus Society of Illinois, NUCATS, SOAAR/Center for Food Allergy & Asthma Research, Susan G. Komen, and UIC Cancer Center.
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 firstname.lastname@example.org or call 877-633-4376.