Speak Smart About Clinical Trials

If you join a clinical trial, you may want to share the news. But words are powerful, and can impact the study. This interactive infographic shares information and videos about clinical research and how to best communicate about it. Access it here.

Pediatric Perceptions & Insights on Clinical Trial Participation

In this November 2020 podcast, the results of a survey of 500 parents and children in the United States, conducted by CISCRP and commissioned by Parexel, are discussed. Key findings include determinants, motivations, barriers  to clinical trial participation and issues surrounding diversity in clinical research. Annick de Bruin, Senior Director, Research Services, CISCRP, moderates.

Access the podcast here.

2020 Q4 USA Today Clinical Research Supplement

The Clinical Trials Supplement features a variety of informative and timely articles covering topics including the importance of clinical trial participation, how pediatric patients and their parents perceive the benefits and risks of clinical trial participation, and the importance of clinical research in diverse communities.

The ‘Medical Hero’ spotlight cover story features Katie Klatt, an athlete, nurse, and student, who is using her experience as a COVID-19 patient to advance clinical research. Read the online article.

A Very Special “Thank You” to the supporting organizations:

Pfizer                                   Oxford PharmaGenesis
Merck                                  CSL Behring
Biogen                                Applied Therapeutics
Bristol Myers Squibb      Boehringer Ingelheim
Segal Trials                        HyperCore International
SubjectWell                       Allergy & Asthma Network
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.

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’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 Story: Juana Espino, Motherhood & Cervical Cancer

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.”

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

Medical Hero Spotlight: Juana Espino, Motherhood & Cervical Cancer

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.”

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)

CISCRP Overview

Download the complete infographic that provides a high-level overview of CISCRP’s services and capabilities here.

CISCRP Partners with SubjectWell on Survey

Race and Gender Play Role in Patient Views About Clinical Research During COVID-19 Pandemic

CISCRP partnered with SubjectWell, a patient recruitment firm, polling 553 patients in the United States to review how race and gender impact clinical trial participation, during the COVID-19 pandemic.

Respondents report concerns about being exposed to COVID-19 if enrolled in a clinical trial. By gender, the survey found that men are less hesitant to participate in non-COVID-19 than women. Women place higher values on precautions such as being able to communicate with a study physician remotely. African American patients are more concerned with precautionary measures like limiting the number of site visits and having the ability to send lab samples from home compared to Caucasian patients.

Review the results of the survey on Subjectwell’s website and in an article published on PM360.

For information about collaborating with CISCRP on research initiatives, contact Annick de Bruin, Senior Director, Research Services, at 617-725-2750, extension 400 or at adebruin@ciscrp.org.