Clinical Research Process Demystified on December 8th with Interactive Webinar

Local Partners, Nonprofit Advocates & International Organizations Share Information about Clinical Trials

Miami, FL, December 2, 2020CISCRP (Center for Information and Study on Clinical Research Participation), a non-profit, invites members of the Miami community to attend AWARE for All – Miami, a free, interactive webinar that:

  • demystifies clinical trials
  • reveals what the experience is like for participants
  • reviews the role and responsibilities of involved medical professionals
  • reinforces the critical role that individuals who participate in clinical trials play in advancing new medicines and treatments

The webinar is scheduled for Tuesday, December 8th, from 4-6pm EDT via a customized, secure online platform.

“The idea of participating in clinical trials is an unfamiliar one, for the vast majority of individuals,” said Joan Chambers, Senior Director CISCRP. “Most people first learn about them at the same time they’ve been diagnosed with a serious illness for which no medication is adequate, or available. There’s a rush for patients and their loved ones to navigate this unfamiliar terrain, in order to make the decision to participate – or not. They have to discuss options with their health care providers. Our AWARE for All programs provide vital information and insight, with a local focus, that can help.”

During the free webinar, attendees learn about clinical trials straight from the patients and researchers who take part in them with a facilitated conversation and will be able to submit questions via a chatbox during the program. Dr. Rishi Kakar, Chief Scientific Officer & Associate Medical Director, Segal Trials, will be the overview speaker. There will be two 5-minute health assessments, including a breast cancer assessment offered by the Florida Breast Cancer Foundation and a mental health/depression exercise offered by Segal Trials.

A virtual health fair with over 30 local and national health and wellness organizations providing educational resources is also part of the platform.

CISCRP’s AWARE for All – Miami program comes at a critically important time. Public interest in learning about clinical trials is high and the need for study volunteers in all disease conditions—including COVID-19 clinical trials—has increased significantly. Led by CISCRP and supported by local research organizations, advocacy groups and a consortium of biopharmaceutical and service provider companies, the educational program is open to all members of the public.

Paulette McDaniels shared that she participates in clinical trials because as an African American woman, 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.

“At CISCRP, helping patients and the public learn about the importance of clinical research participation is at the heart of our mission. We’re extremely excited to be presenting this event with support from a diverse team of stakeholders from the Miami community,” said Joan Chambers.

The AWARE for All – Miami supporters include Allergy & Asthma Network, American Kidney Foundation, Arianna’s Center, k, Clinical Pharmacology of Miami, Clinical Site Partners, LLC, Debbie’s Dream, Florida Breast Cancer Foundation, JDRF, , Lupus Research Alliance, Myovant, NAMI, National Kidney Foundation, National MS Society, Pals for Health, Peoples Science, Segal Trials, Susan G. Komen,  and the AWARE Industry Consortium.

AWARE for All – Miami Clinical Research Webinar will be held Tuesday, December 8th, from 4-6pm EDT.  Attendance is free, but please register today by clicking here. To learn more, visit awareforall.org or call 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.

Clinical Research Process is Explained in Miami-focused Webinar December 8th

Local Partners, Nonprofit Advocates & International Organizations Share Information on Clinical Research

Miami, FL, November 23, 2020— The AWARE for All – Miami webinar is an important program that builds awareness about both clinical research participation and the critical role that individuals who participate in clinical trials play in advancing new medicines and treatments.

The Center for Information and Study on Clinical Research Participation (CISCRP) invites the Miami community to attend AWARE for All, a free webinar about clinical trials on Tuesday, December 8th, from 4-6pm EDT via a customized, secure online platform.

For the vast majority of individuals, the idea of clinical trials is a new and unfamiliar one. Most people first learn about clinical trials at the same time they are diagnosed with a serious illness for which no medication is available or adequate. Patients, their families, friends and health care providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials is often overwhelming and confusing.

CISCRP’s AWARE for All – Miami program comes at a critically important time. Public interest in learning about clinical trials is high and the need for study volunteers in all disease conditions—including COVID-19 clinical trials—has increased significantly. The free program aims to offer an introduction and insight into the clinical research process, the decision to participate, and even the research team and their roles. Led by CISCRP, a non-profit, and supported by local research organizations, advocacy groups and a consortium of biopharmaceutical and service provider companies, the educational program is open to all members of the public.

Clinical research participant Jim Butler thanks his wife who brought the clinical 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…”

Tomma Hargraves is a clinical trial participant and credits her participation 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.

Dr. Rishi Kakar, Chief Scientific Officer & Associate Medical Director, Segal Trials will be the overview speaker. In addition to a facilitated conversation with patients, researchers and health care professionals, there will also be two – 5-minute health exercises and a virtual health fair with over 30 local and national community health organizations.

“This unique online program will answer a lot of key questions about the clinical research process, how clinical trials work, and what to expect as a study participant´ said Joan Chambers, Senior Director at CISCRP.  “Viewers will learn about clinical trials, straight from the patients and researchers who take part in them with a facilitated conversation and be able to submit questions via a chatbox during the program. We’re extremely excited to be presenting this event with support from a diverse team of stakeholders from the Miami community.”

AWARE for All – Miami Clinical Research Webinar will be held Tuesday, December 8th, from 4-6pm EDT.  Attendance is free, but please register today by clicking here. To learn more, visit awareforall.org or call 877-633-4376.

The AWARE for All – Miami supporters include Allergy & Asthma Network, American Kidney Foundation, Arianna’s Center, Bladder Cancer Advocacy Network, Clinical Pharmacology of Miami, Clinical Site Partners, LLC, Debbie’s Dream, Florida Breast Cancer Foundation, JDRF, Latino’s Salud, Lupus Research Alliance, Myovant, NAMI, National Kidney Foundation, National MS Society, Pals for Health, Peoples Science, Segal Trials, Susan G. Komen,  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.

 

 

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CISCRP Webinar About Clinical Trials Set for November 18th Featuring the Los Angeles Community

CISCRP (Center for Information and Study on Clinical Research Participation), a non-profit, announces it's AWARE for All webinar about clinical trials and clinical research participation. This free event has a Los Angeles focus, with patients and researchers from the area participating in a moderated panel. There is also a virtual health fair.

Los Angeles, CA — November 5th — CISCRP (Center for Information and Study on Clinical Research Participation) invites the Los Angeles Community to attend AWARE for All, a free webinar about clinical trials on Wednesday, November 18th, from 4-6PM PDT, via a customized, secure online platform.

CISCRP’s AWARE for All – Los Angeles program comes at a critically important time. Public interest in learning about clinical trials is high and the need for study volunteers in all disease conditions—including COVID-19 clinical trials—has increased significantly. The free program aims to inform and empower the public in understanding the clinical research process in order to make decisions about their health care. Led by CISCRP, a non-profit, and supported by local research organizations, advocacy groups and a consortium of biopharmaceutical and service provider companies, the educational program is open to all members of the public.

“We’re excited to be presenting this event,” said Joan Chambers, Senior Director at CISCRP. “The online program will answer a lot of key questions about the clinical research process, how clinical trials work, and what to expect as a study participant. Viewers will learn about clinical trials, straight from the patients and researchers who take part in them with a facilitated conversation and be able to submit questions via a chatbox during the program.”

Dr. Jonathan Jackson from Massachusetts General Hospital and the Harvard Medical School will be the overview speaker. In addition to the panel discussion, there will also be two – 5-minute health exercises and a virtual health fair with local and national community health advocates and researchers..

“Clinical research awareness is vital to the success of clinical trials,” added Dr. Jonathan Jackson, Ph.D., Director of Community Access, Recruitment, and Engagement (CARE) Research Center. “The success of clinical trials also depends on including a diverse and inclusive group of individuals representative of those who may receive the new therapy if it is approved for use.”

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.

Clinical research participant Jim Butler thanks his wife who brought the clinical 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 – Los Angeles Clinical Research Webinar will be held Wednesday, November 18th, from 4-6pm PDT. Attendance is free, but please register today by clicking here. To learn more, visit awareforall.org or call 877-633-4376.

The AWARE for All – Los Angeles supporters include Allergy & Asthma Network, City of Hope, Pancreatic Cancer Action Network, PALS for Health, Alzheimer’s LA, Debbie’s Dream Foundation, Alliance for a Better Community, Being Alive LA, WeSPARK Cancer Support Center, Providence Clinical Research, Peer Plus, 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 http://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 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.

“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.

Spring 2020 Patient Diversity Campaign

Two articles were featured in the following newspapers:

Atlanta Voice – View PDF of Full Spread

Chicago Citizen – View PDF of Full Spread

Michigan Chronicle – View PDF of Full Spread

Philly Tribune – View PDF of Full Spread

Excelsior (Los Angeles) – View PDF of Full Spread

View articles in English.

View articles in Spanish.

Four-value add digital news editions: 

Chicago Defender

Atlanta Daily World

News Pittsburgh Courier

Atlanta Tribune

A Very Special ‘Thank You’ to the Supporting Organizations:

Pfizer

Merck

BMS

Biogen

Alkermes

Subject Well

Segal Trials

ASH Research Collaborative

Praxis

CISCRP would like to recognize and extend a ‘Thank You’ to Praxis for donating their pro-bono graphic design expertise to create the advertisement.

View the Advertisement

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.

 

FREE Clinical Research Public Education Program to be Held Online on October 1

Focus on Clinical Trials to Develop New Treatments and Vaccines for Diseases Including COVID-19

PHILADELPHIA— The Center for Information and Study on Clinical Research Participation (CISCRP) announces that it will be hosting an AWARE for All public education program on Thursday, October 1st, from 4-6pm EDT via a secure online platform.  The program is free-of-charge and available to the general public. In addition to broad clinical research topics, some program material and exhibitors will also provide health and clinical trial information specific to the greater Philadelphia area. 

CISCRP’s AWARE for All Philadelphia program comes at a critically important time when public interest in learning about clinical trials is high and the need for study volunteers in all disease conditions — including COVID-19 clinical trials —has increased sharply.  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. 

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

The AWARE for All online program on October 1 will feature Dr. Jonathan Jackson from Massachusetts General Hospital and the Harvard Medical School as the keynote speaker.  It will include a panel discussion among patients and researchers sharing their real experiences in clinical research.  Attendees will have an opportunity to ask questions, participate in two health exercises, and visit a virtual educational health fair connecting with local and national community health advocates and researchers. A virtual theater will also be available presenting educational videos.

“Clinical research awareness is vital to the success of clinical trials,” added 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.”

Supporters of this 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.

The public is encouraged to register to attend AWARE for All Philadelphia by visiting the Eventbrite page.  Please call 877-633-4376 or visit AwareForAll.org for more information.

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.

“Medical Heroes,” Participants in Clinical Trials Honored

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.

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.