CISCRP collaborated with Sanofi and Langland to develop a public service announcement showing what the world would look like without clinical trial volunteers.
Here’s a hint – empty.
Video provides a clear overview on Informed Consent and eConsent
Made possible by a sponsorship from Otsuka.
How do you get started on the road to clinical research participation? Our fun and informative interactive infographic paves the way with a Clinical Research Participation Basics Roadmap.
When Gabriel was in college, she always felt tired and would wake up feeling stiff. She dismissed it as general soreness from working out with her dance team.
The Brooklyn-native Gabriel, then 21, went to her doctor, who told her she probably had sinus problems and encouraged her to take allergy medicine.
A turning point came a month later when she noticed patches of hair missing. She went to a different doctor who asked her a series of questions, including about how tired she was and whether her hands changed colors when they got cold. After testing, Gabriel was diagnosed with lupus, an autoimmune disease.
At the time, there weren’t medications specifically designed to treat lupus. Instead, doctors had a blanket approach and prescribed a variety of medicines, including steroids, to treat symptoms, but nothing was specific to the illness.
“Nobody knew how much pain I was in,” said Gabriel, now 36, who describes lupus as, “a hidden disease.”
Many of the medicines had side effects, including increased risk for liver and kidney problems, as well as cataracts and glaucoma.
She still had flare ups that sent her to the hospital, including an inflammation of the membrane around her heart. It was so bad, she had to leave an internship and quit the dance team.
After graduating, Gabriel toured the country as a poet and singer. While in Montana for a performance, she suffered an episode that caused her to be hospitalized due to a lupus-related condition that causes blood clots.”
When her doctor suggested trying a clinical trial for a new lupus treatment, Gabriel, who’s African American, balked. She was worried because, historically, people of color have been taken advantage of during medical trials.
She later found out the trial was a success and her doctor prescribed the approved drug. The treatment worked but it was demanding, as Gabriel needed to take a full day off from work to receive IV therapy.
Next, Gabriel decided to participate in the next clinical trial, which tested that approved medicine as a self-administered, weekly therapy.
For Gabriel, this drug helped make her symptoms more manageable allowing her to discontinue her use of steroids.
While Gabriel was initially nervous about clinical trials, she’s glad she talked with her doctor and other medical professionals, and realized that clinical trials are essential for finding new therapies and cures.
“Due to a lack of participation by women of color in a lot of these trials, (researchers) were not able to actually track if it worked for us,” she said. “There’s only one way to find out if it works; somebody has to do it.
“I just felt like, ‘You know what? I’m fine with that, because there could be a really great benefit from it.’ And I did end up benefiting from it.”
Gabriel is on the patient advisory boards for The Center for Information and Study on Clinical Research Participation, a non-profit dedicated to educating and engaging the public and patients about clinical research.
She encourages patients with lupus and other diseases to consider clinical trials, which have many safeguards to minimize danger for participants. She recommends doing your own research, asking questions, and talking to your doctor about clinical trials.
She’s sharing her story and hopes to inspire others.
“It’s becoming a community of people that are advocating and I think there is hope for a cure,” Gabriel said.
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.
The Global Resilience Institute at Northeastern University released a “COVID-19: Staying Safe, Resilient & Protected” website to assist the public and provide comprehensive information on vaccines, how to be safe and resilient, and enterprise restart and recovery tactics.
You can access the site here.
Content is delivered in English and Spanish.
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.