CISCRP and INC Research Release New Clinical Trials Animation

By: Leslie Perez

In honor of Clinical Trial Awareness week this past May, CISCRP worked with INC Research to develop an online animation to highlight the impact of clinical research. CISCRP previously collaborated with INC Research, in 2016, to host the “Inspiring Hope” Ideathon event, held to develop innovative ideas for raising awareness about clinical research. In hopes of continuing this awareness-building effort, the two organizations continue to brainstorm new ways, such as creation of this animation, to raise awareness of the role clinical research plays in public health.

The animation, titled “The Impact Clinical Trials Have on All of Us,” found on the CISCRP Homepage and CISCRP’s HealthUnlocked Community, begins by asking viewers to consider how healthcare products became available to the public. The video then encourages individuals to think about the role clinical trials play in the development of new medicines, devices and therapies.  It emphasizes that for each healthcare product currently available, there are millions of clinical trial volunteers who made these possible through their participation in clinical research. The video honors the role volunteers play in the development of seemingly basic medicines that help relieve the occasional headache to life-saving treatments for cancer patients. The role these individuals play in clinical research is one that CISCRP recognizes and honors through our Medical Heroes Campaign. This animation compliments this campaign and brings to light the need for greater awareness of the impact clinical trials have on all of us.

The intent of this animation is to reach new audiences and educate them about clinical research. The animation is available online, making it simple and easy for public viewing and sharing. We encourage research sites, patient organizations, and the general public to share this video with their communities to spread greater awareness of the impact of clinical trials.

This animation was a natural progression following our collaboration last year with CISCRP on the “Inspiring Hope” Ideathon, a ground-breaking event aimed at generating unique and effective ideas that raise awareness of clinical trials and study participation,” said Clare Grace, PhD, Vice President, Site and Patient Access, INC Research.  “There is a critical need for a better understanding of what clinical trials are and why they are vital to the health and well-being of patients around the world, and this animation addresses those issues.  We’re excited to provide this imporant tool to clinical research sites and others interested in joining with us to build awareness.”

Watch the video on CISCRP’s Homepage, on INC Research’s YouTube page, or feel free to download and share across your networks at your convenience using the following link: https://vimeo.com/210954960/8483b479ab

To view other educational videos by CISCRP, please visit our Education Center.

CISCRP’s USA Today Supplement on Clinical Trials Kicks Off the 2017 National Outreach and Awareness Initiative

By: Rachel Minnick

CISCRP has formally launched a new mass media campaign, The National Clinical Trial Outreach and Awareness Initiative that will reach millions of Americans to educate them about the importance of clinical trials and promote greater awareness of clinical research.  This initiative falls under our renowned Medical Heroes Campaign, a public service movement dedicated to engaging the public in thinking differently about clinical research.

As part of the new outreach and awareness initiative, CISCRP will be producing and distributing educational supplements in major national newspapers and publications in an effort to inform the public and patients about the clinical research process.

To kick off the initiative for 2017, we teamed up with several leading organizations including TransCelerate Biopharma Inc., Biogen, Merck, Pfizer Inc., Janssen Pharmaceuticals Inc., Segal Institute for Clinical Research, and Praxis to develop a supplement on Clinical Trials that was published in USA Today on May 12th.  The supplement hit newsstands in a number of major cities including Boston, New York, Phoenix, Washington D.C., Baltimore, and Los Angeles and was expected to reach 20 million people through print and digital channels.

For this first edition of 2017, the Clinical Trials supplement included an advertisement thanking and honoring individuals, Medical Heroes, who have given the gift of their participation in clinical trials; a feature story about Jameisha Brown, a self-proclaimed “cancer thriver” and her experience with clinical trials; and a headline profile about T.J. Sharpe, a melanoma cancer survivor and clinical trial participant.  These advertisements and articles are not only educational, but also engaging and inspiring.

The supplement also included a forward by CISCRP’s Founder, Ken Getz, on “Why Patients in Clinical Trials Are True Medical Heroes” highlighting the importance of recognizing those who participate in research and an editorial by Ken titled “A Clinical Trials Guide for Patients” that includes practical information and facts about what a patient can expect when taking part in a clinical trial.

The supplement has gained a great deal of recognition across the industry and beyond for its’ informative and awareness-building content.  We are pleased to share that CISCRP’s thank you to medical heroes advertisement will be appearing in the upcoming “Mid-Summer Classic” MLB All-Star Game official souvenir program in July.  The program will be available for purchase during All-Star week at the Florida Marlins Park and the Miami Beach Convention Center.  In addition, the program will be available nationwide at newsstands, bookstores, mass and specialty stores, supermarkets, airports, and online at MLB.Shop.com.  The total readership for the program is estimated at 800,000 nationwide!  This is another opportunity for us to spread greater awareness of the importance of clinical trials and honoring medical heroes to an even larger audience.

We have plans to develop another clinical trials supplement, later this year, to be published in a different major national newspaper.  There will be opportunities for sponsoring companies to contribute advertisements and/or editorial content.  Contact Rachel Minnick, rminnick@ciscrp.org, for sponsorship options and for the chance to take part in the development of this next educational supplement.

Medical Hero Spotlight: Kaamilah Gilyard

Speaking Up and Sharing Hope for Lupus Warriors

Kaamilah 1Talking about a health problem can be difficult, but when the problem is an autoimmune disease that causes the body to attack its own tissues it can be just as hard to keep quiet. Kaamilah Gilyard, 35, was first diagnosed with lupus at 17, but has traced back signs of the disease starting as young as 12-years-old, including the tell-tale butterfly face rash. Despite spending much of her teenage years quietly wondering what was causing her frequent ER visits and extreme fatigue – skipping classes to take naps – she’s been speaking up ever since.

“I am a living, walking example of what lupus is, what it looks like, and how it can affect someone. I want people to see me pushing through and staying positive so that if they’re suffering they keep pushing too,” she says.

It all began after her doctor recommended against going to college. Kaamilah refused to let her life’s adventures end at 18, so she applied anyway and wrote her college admissions essay about lupus. She went on to study at and graduate from Penn State, all the while making speeches and writing essays for courses about the condition’s effect on her.

“I have a big mouth, so I figured I might as well use it for good,” she says.

Kaamilah continues to share her inspiring words at a wide range of conferences and public speaking engagements, including CISCRP’s AWARE for All – New York event, the Lupus Research Institute (LRI) Lupus Trials Fair, and even in a congressional lupus caucus. She’s also heavily involved with the Alliance for Lupus Research, sharing her story in online videos and captaining teams for the organization’s annual walk for the past 7 years.Kaamliah 2

Kaamilah candidly shares her experience in clinical trials with other “lupus warriors” and those considering trial participation. “No man is an island,” she explains, saying she participates in trials not only for her potential benefit but also for her friends, family, and the millions of strangers who could benefit from her participation, too.

Her reason for getting involved in her first clinical trial, which she calls a “bright star” of her ten years living with lupus, was to help “take back the power” of her body. In her speech given at the LRI 2014 Lupus Trials Fair, she encouraged other patients to do the same, saying “we may have lupus, but lupus does not have us.”

She entered that study after one of the worst flare-ups in her life, following her doctor’s recommendation to participate and admitting that she’d “try just about anything” to feel better. For the next 3 years, she participated by taking her assigned pill and attending site visits for check-ups with a physician; including two years in the ‘open-label’ portion, during which she knew she was receiving the study drug. Even though she felt some improvement, she eventually left the trial due to the onset of lupus nephritis, or kidney inflammation.

“Everything happens for a reason though,” she says; the trial was terminated shortly after she left due to a lack of efficacy, meaning the researchers couldn’t prove that the drug was helping participants more than the standard treatments available.

Behind everything she does to advocate, Kaamilah says, is hope—for less flare-ups, for more “good” days, for the opportunity to live a “normal” (lupus-free) life, and most-of-all for researchers to learn more and someday cure the disease.

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.