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, 2020— CISCRP (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’s Patient Diversity Media Campaign Cited in ISMPP Article

PDMC-broadsheet-English-Spanish
The campaign is in English and Spanish.

CISCRP’s educational Patient Diversity Media Campaign was recently cited in an article in The MAP Newsletter, titled “Equity, Diversity, and Inclusion: Defining a Roadmap for Our Profession”.

Authored by Catherine Skobe, MPH, Pfizer, Angela Sykes, MA, MPhil, Pfizer, and Chris Winchester, DPhil, Oxford PharmaGenesis, the article discusses the importance of improving the outcomes for diverse populations in healthcare, building trust with patient and caregiver audiences, communicating scientific research clearly and making information accessible to all. Pfizer and Oxford Phamagenesis were among a number of companies that recently supported CISCRP’s Patient Diversity Media Campaign.

The MAP is a publication of ISMPP (International Society for Medical Publication Professionals).

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.

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.

CISCRP’s Journey to Better Health Project Honored with Citeline Awards “Medidata Clinical Parntership of the Year”

Award is Shared with Janssen, MedEvoke and Peer Plus

CISCRP is excited to share the Citeline Awards Medidata Clinical Partnership of the Year Award with Janssen, MedEvoke and Peer Plus for the Journey to Better Health, a mobile healthcare exhibit about clinical research that travelled to diverse communities across the United States. This innovative educational and recreational vehicle, equipped with interactive tools, healthcare information and relevant resources and data was staffed by knowledgeable experts and multi-lingual, CISCRP clinical research Ambassadors.

A variety of stations housed in the exhibit focused on:

  • Study volunteers and their experiences
  • Resources and take-aways for individuals interested in clinical research participation
  • Questions about eligibility criteria and the informed consent process in order for individuals to make informed decisions about clinical research participation
  • Potential risks and benefits

Stops included public schools, museums, libraries, community and senior centers, places of worship and free public health expos in Atlanta, Charlotte, Chicago, New York City, Newark and Long Island.

To view a video about the Journey to Better Health exhibit, click here. For additional educational resources about clinical research participation, visit CISCRP’s Education Center.

Medical Hero Spotlight: Juana Espino, Motherhood & Cervical Cancer

Written by Melissa E. Daley, Communications & Marketing Manager, CISCRP

Juana Espino, her husband and two children were all looking forward to the birth of her third child. Two weeks before her delivery date, Juana started spotting blood. Juana immediately made an appointment with her obstetrician. During the exam, the physician located a mass near her cervix and recommended a biopsy, after the baby’s birth. Juana’s c-section went well and her new daughter was healthy.

But Juana was not.

The results of the biopsy indicated that she had Stage 4 cervical cancer.

“From there, it was just a rollercoaster, at first,” recalled Juana. “I didn’t have health insurance. You always have a pap smear at the beginning of your pregnancy, and mine was normal. The cancer had really grown while I was pregnant, and the doctor was worried about it metastasizing.”

The incidence of cervical cancer complicating pregnancy is low; only about 1% – 3% of woman diagnosed with cervical cancer are pregnant or postpartum when they are diagnosed. (1)

After discussing several options of treatment, Juana’s obstetrician advised that she meet with Dr. Joseph A. Lucci, a board-certified gynecologic oncologist at The University of Texas Health Science Center at Houston (UT Health). Dr. Lucci was also the Principal Investigator of a clinical trial treating Stage 4 cervical cancer. Juana met with Dr. Lucci and learned more about the course of treatment that the trial would include: a hysterectomy, followed by 6 weeks of chemotherapy and radiation.

“The good thing is, I have a big family,” said Juana. “I talked about it with my husband and my 6 sisters went with me to talk with Dr. Lucci about the clinical trial. I am grateful that I had a big support system. I was truly blessed.”

Since Juana was the mother of a newborn, it was decided to delay chemotherapy and radiation for two months. This lead to another difficult decision.

“Because I was having radiation treatment, we decided that my mother would take care of our baby, to be on the safe side,” Juana recounted. (Patients receiving certain types of radiation treatment are advised to limit or avoid contact with children under the age of 18 and pregnant women. (2) “It was hard, to be honest, but  I knew my mother would take good care of her. I did get to see the baby, of course, and when I did, I was really careful. I would dress in layers (because of the radiation) and hold her on a pillow, not directly.”

Juana’s sisters were encouraging when the effects of the radiation treatment became particularly severe during the last part of treatment. “I didn’t feel as sick during chemo as I did during the radiation,” Juana explained. “The radiation was really painful and my sisters kept telling me that I could do it.”

Aileen, Juana’s niece, was also instrumental in supporting her during treatment. “She postponed going to college, to be with me on this journey,” said Juana.

Juana was impressed with the care she received during the clinical trial. “I could call Carole Robazetti (the coordinator) in the middle of the night, and she’d be there. Dr. Lucci was also available at any time to discuss how I was feeling and what was happening,” said Juana. But Juana didn’t discuss one major impact that she experienced, until three years after the trial had concluded.

While participating on a CISCRP Patient Advisory Board, Juana listened to panelists describing the physical and emotional impacts of severe atrophic vaginitis, symptoms that she was experiencing, but never discussed with Dr. Lucci or Carole. (CISCRP Patient Advisory Boards solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study related areas. Learn more here).

“I was afraid to speak up and after I heard the others share their stories, I decided to talk with Carole. She asked me why I hadn’t said anything before, and I just hadn’t felt comfortable.” Juana was prescribed medication that has improved the condition significantly.

The treatments Juana received in the clinical trial eradicated the cervical cancer. Juana and Carole became friends.

“I really wanted to give back somehow, and Carole told me about WOW, the Women Well Program,” said Juana. WOW was founded in 2018, under the umbrella of the Latattore Foundation and the University of Texas. WOW provides pap smears and mammograms at no cost to low-income/uninsured women through monthly community health fairs. Learn more about WOW at https://latattore.com/wow/.

“Members of the Hispanic community don’t always have health insurance, so WOW is helping to save peoples’ lives. I started as a volunteer and now I’m on staff,” said Juana.

Juana says she would participate in a clinical trial again, and that she would be more open to discussing related impacts. “We need to speak and let people know what’s happening,” Juana said.

When asked if she has any words of advice to individuals considering clinical trial participation, Juana advised the following.

“When you’re deciding about a clinical trial, read everything. Read every detail. Those little details will help you decide if you want to be part of it. And get a second opinion before you make your final decision.”

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.

Sources:

(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745864/#:~:text=The%20incidence%20of%20pregnancy%20complicated,the%2012%20months%20after%20delivery.

. (2) https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy)