Supporter Spotlight: Biogen and TransCelerate

By Rachel Minnick

CISCRP’s many educational programs and initiatives are fueled by the dedication and involvement of our supporters and volunteers.  We are pleased to be spotlighting two of these supporters in this edition of the newsletter, both of whom made important contributions to our recent USA Today supplement on Clinical Trials. The supplement is part of our National Clinical Trial Outreach and Awareness Initiative and we caught up with 2 of our top sponsors – Biogen and TransCelerate Biopharma Inc. – to find out what drives their company’s passion for clinical research education and awareness. We asked each one to comment on their company’s commitment to raising public awareness about clinical research and how this fits into their organization’s overall mission.  We also asked what other specific initiatives – in addition to supporting CISCRP’s National Outreach Campaign – that their companies are working on at this time to raise awareness about clinical research.

Biogen

Biogen develops medicines for debilitating medical conditions with the goal of making a meaningful difference in patients’ lives.  Patients are at the center of everything we do here at Biogen.  Clinical research is a critical part of getting meaningful therapies to patients around the world, so it is important we partner with CISCRP and other companies to raise awareness of opportunities to participate in clinical research. We truly appreciate and thank clinical research participants and their families for their enormous contribution in helping to advance medical research and discover potential new treatments.

In addition to supporting CISCRP’s National Outreach Campaign, Biogen has developed educational tools as part of our commitment to raising awareness of clinical research and making information more accessible. Biogen has created videos, booklets and clinical research study websites that explain what clinical research is and what participation means for patients and families.  Furthermore, in order to help inform and educate patients about the clinical trials in which they participate, Biogen is committed to provide a factual summary of clinical trial results in plain language and make the summaries available to research participants at the end of the study. Biogen continues to seek partnerships and novel ways in which we can meaningfully engage the public on the topic of clinical research and provide helpful information to patients and families.

One of the pioneers in biotechnology, Biogen today has the leading portfolio of medicines to treat multiple sclerosis (MS), has the first and only approved treatment for spinal muscular atrophy (SMA) and is at the forefront of research into new medicines for neurological and neurodegenerative conditions. Led by world-class research and development, Biogen uses novel science and leading-edge technologies to create, commercialize, and manufacture transformative therapies for patients with few or no treatment options.  For more information, visit www.biogen.com.

TransCelerate Biopharma Inc.

As an industry, we have an opportunity to improve the links between clinical research, the public (patients, and their care-givers), and health care delivery (point of care/HCPs). Today, the role and potential impact of clinical research is not broadly known, and misconceptions and mistrust surrounding clinical research persist. There is low engagement with clinical research, low consideration of clinical trials as a care option, and an overall disconnect between available clinical trials and potential participants.  Individual pharmaceutical companies are making investments to engage with communities, attempting to build awareness, and developing recruitment campaigns for clinical trials. We believe we can have much bigger impact by pooling our efforts together to influence sentiment and understanding of clinical trials more broadly. This can have a substantial ripple effect on the clinical research enterprise.

Our mission is “to collaborate across the global biopharmaceutical research and development community to identify, prioritize, design and facilitate implementation of solutions designed to drive the efficient, effective and high quality delivery of new medicines.” Critical to the development of innovative new therapies, are trial participant volunteers, and a shared understanding in the public of the value medicine research and development brings to our society.

We envision a future in which key stakeholders are better informed about clinical research, and recognize it as a critical component of advancing population health. A future where there is increased discussion of clinical trial options between HCPs and their patients, and information about clinical trial options is available in clear and straightforward language.  We want to inspire and equip healthcare professionals to engage in more frequent and more fulfilling conversations with patients about clinical research and clinical trial options.

TransCelerate BioPharma Inc. was launched in 2012 as a non-profit organization to improve the health of people around the world by simplifying and accelerating the research and development of innovative new therapies.  For more information, visit www.transceleratebiopharmainc.com.

We want to thank Biogen and TransCelerate for their dedication to CISCRP’s mission and for helping to create awareness about the importance of clinical research.  Be sure to check out the USA Today supplement on Clinical Trials HERE!

We will spotlight a different supporter or volunteer in each Newsletter, so stay tuned for new features each quarter.

 

CISCRP’s Perceptions and Insights Survey to Collect Public’s Feedback on Clinical Research

By: Leslie Perez

An important part of CISCRP’s mission is to gain a better understanding of public and patient perceptions of clinical research in an effort to improve trial volunteer participation and experience. It is for this reason that CISCRP’s Research Services team has developed a global survey to gather perceptions and insights data about patient experiences. The study has been conducted in 2013 and 2015 and is currently being conducted again in 2017.

To ensure the effectiveness of each survey, CISCRP’s Research Services team receives input and support from various organizations and investigative sites, and has the survey reviewed by an ethical review committee. The survey design also received input from the public, patients, and patient advocacy groups.  The survey consists of a series of questions which inquire about an individual’s clinical trial experience in addition to overall general perspectives on clinical research. Early indications are that the number of responses to the 2017 study will come close to or match the unprecedented response to the 2015 survey, with an even more diversified regional representation.  For example, there is a substantially higher representation of Japanese respondents in 2017 – offering valuable little-known views on clinical research from this particular region.

Annick Anderson, Director of Research Services states, “The latest 2017 Perceptions & Insights study will reveal exciting new insights on various topics – including the perceived value of various patient engagement initiatives and overall receptivity to the integration of clinical research into clinical care.”

Insights from past studies in 2013 and 2015 have provided important feedback for research professionals who may be seeking better ways to educate the public and improve clinical trials for patients. Data from these surveys are summarized in a series of reports that focus on different topics such as public literacy, public perceptions, decision to participate, and participant experiences. The findings are explained through various charts, graphs, as well as key takeaways. The reports are made available for download and viewing on the CISCRP website.  Many research professionals will reference the survey data in their white papers, publications, and training activities.

As has been done in the past, findings from this year’s survey will be made available free of charge on the CISCRP website, however, a donation to CISCRP is always encouraged for downloading the reports.  CISCRP will also present the findings at conferences, meetings, and forums throughout the year.

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.

Search Clinical Trials Service Sees Exponential Growth in 2015

CISCRP is helping more patients find clinical trials than ever before with its complimentary Search Clinical Trials service. This assistance service is provided to patients and their families and health care providers looking for information about specific clinical trials. Since 2004, CISCRP has offered this service and it has grown substantially. More than 200 patients request searches each month. This past year — 2015 — saw very strong growth in the service, with a 34% increase in requests over the prior year resulting in more than 2,600 total searches conducted.

“Since the beginning, Search Clinical Trials has been an important free public service that we have offered the patient community and their network of support. Word has spread and now thousands of patients are reaching out to CISCRP each year for assistance,” explains Ken Getz, CISCRP Board Chair and Founder.

Finding a clinical trial can be a difficult process, especially for someone who doesn’t know where to look for the information. Even when clinical trial information is uncovered, so much of the information available is written in very technical language and it is often incomplete. Many patients have attempted to identify clinical trials on their own and they are now looking for help. That’s where CISCRP’s Search Clinical Trials service comes in.

A phone call to CISCRP’s toll-free number or a few minutes spent on the CISCRP website to fill out an online request form will instruct the Search Clinical Trials team to get to work gathering listings and information about relevant clinical trials.

The CISCRP team searches a wide variety of web sites — including clinicaltrials.gov and CenterWatch.com — and compiles a list of active clinical trials that may be relevant studies for patients and their families to consider. These listings contain investigative site contact information and links to more information.

Next, the CISCRP SCT team combines this listing of active clinical trials with reference resources designed to educate patients about clinical trial participation, key questions to ask, and information about the clinical research process. Results are sent either by mail or email within 5-10 business days.

CISCRP strives to provide accurate and helpful clinical trial information to each person who requests our service, making the information easily available and simply understood. The goal is to simplify the process for patients seeking information about other treatment options and assist them in learning about relevant clinical trials actively enrolling participants in their area.

CISCRP is not involved in recruiting patients for clinical trials or conducting clinical trials. If you are a patient seeking assistance to find a clinical trial, we invite you to fill out our online submission form to request a custom clinical trial listing, or call us at 1-877-MED-HERO.

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.

Lace Up Your Sneakers! Two Medical Heroes Appreciation 5K Events Coming This Spring

This spring, clinical research professionals from across the globe will lace up their sneakers and go the distance to honor study volunteers at both the ACRP 2016 Meeting & Expo and the DIA 2016 52nd Annual Meeting. This is the third year CISCRP has organized its Medical Heroes Appreciation 5K Run & Walk at the DIA Annual Meeting, and its second year at ACRP’s annual conference.

“We’re starting 2016 energized about the many awareness-building events planned for year, including these upcoming Medical Heroes Appreciation 5K events,” says Ellyn Getz, Senior Manager of Development, Fundraising and Events at CISCRP. “We’re so pleased that these events are drawing large crowds of runners and walkers and raising awareness about the gift of participation from study volunteers,” Getz adds.

MedicalHeroes-4410CISCRP will be kicking off the spring 5K season with the ACRP event in Atlanta, GA on April 16 and continue onto Philadelphia for the DIA event on June 27. These events follow a fall season of 5Ks at both the SCRS Site Solutions Summit and the ISPE conference.

“We’re proud to partner with CISCRP and host another 5K at our meeting this year. We expect many of our distinguished members and other clinical research professionals to run again in appreciation of the clinical trial participants who make new medical treatments and discoveries possible,” says Jim Kremidas, Executive Director, ACRP.

Medical Heroes help advance public health and medical knowledge through their brave act of participating in clinical trials. Medical Heroes are found in everyday places, and they deserve our recognition and gratitude. Funds raised at Medical Heroes Appreciation events support educational programs that are offered free-of-charge to patients and their families. The CISCRP team is excited to see this key initiative continue to grow and is grateful for the generous sponsors who help make it a reality.

To register and learn more about the upcoming Medical Heroes Appreciation 5K’s please visit www.ciscrp.org/medhero5K or call 617-725-2750. For information about sponsorship opportunities, please contact ellyngetz@ciscrp.org.

CISCRP Updates its Educational Brochures Library

Exciting news about CISCRP’s educational resources! In 2016, CISCRP will be releasing new updated and redesigned versions of our award-winning brochures. As an organization CISCRP strives to provide information that is accurate, culturally-relevant, and easy-to-read. Our newly designed and updated brochures are written at a 6th grade reading level on a variety of topics including:

  • Should I Participate? (formerly Education Before Participation), an introduction to clinical research participation.
  • Debunking Common Myths, an easy-to-understand explanation and debunking of common myths about clinical research.
  • Should My Child Participate? (formerly Children and Clinical Studies), a resource for parents interested in learning about their children’s options for clinical research.
  • What is a Placebo?, offering information about placebos and how they are used in clinical trials.
  • African Americans and Clinical Research, explaining the basics of clinical research and why African American volunteers are needed.
  • Los Hispanos y la Investigacion Clinica, an educational Spanish-language brochure for the Hispanic community explaining the importance of clinical research participation.

You may also notice a new seal of approval on the back page of our new materials, indicating that text was reviewed and approved by a CISCRP editorial panel.

Throughout the content revision process, we have engaged patients, study participants, patient advocates, and clinical research professionals to review our materials and provide feedback so that we can better serve our readers with clear, concise, and accurate information. We consider this editorial feedback extremely valuable in ensuring that our materials provide high quality content that is accessible to readers of various literacy levels.

CISCRP educational brochures engage and inform patients, family members of study participants, and the general public about what it means to participate in a clinical trial. Brochures are available for order through the CISCRP store in up to 35 different languages, and are available with special bulk pricing—perfect for distributing in physician and investigative site waiting areas.

If you are interested in serving on an editorial panel for CISCRP educational resources, please contact mayawise@ciscrp.org or 617-725-2750 for more information.

CISCRP to Host Second Annual Medical Heroes Appreciation Dinner at Patients as Partners 2016 Conference

CISCRP is pleased to be holding its second annual Medical Heroes Appreciation Dinner, in partnership with the 2016 Patients as Partners Conference in Philadelphia, PA. This special event will be held on Sunday evening March 13, kicking off the 2-day meeting that follows on Monday and Tuesday.

Dinner guests will have an opportunity to network and honor the Medical Heroes who give the gift of participation in clinical research. The evening will include a special presentation from CISCRP’s Board Chair and Founder Ken Getz and EMD Serono’s Vice President of Global Clinical Operations – External Innovation Paulo Moreira on “Anticipating the Impact of New Patient Engagement Initiatives on Drug Development Performance.”

All proceeds from this event will be used to support future education and outreach initiatives for patients and the public.

Yards_Tasting_2“Last year’s Med Hero Dinner was very successful and attendees really enjoyed the experience,” said Ellyn Getz, CISCRP’s Senior Manager of Fundraising, Development and Events “We’re grateful for this partnership with the Conference Forum and we’re so pleased to continue this tradition of honoring study volunteers.”

The day after the dinner event, Ken Getz will co-chair the third-annual Patients as Partners conference.  Ken will deliver a keynote presentation addressing the Critical Need to Establish Greater Health Care Provider Involvement. Other highlights of the conference: patient narratives, including stage IV melanoma cancer survivor Jamie Goldfarb, a talk from Marc Boutin, JD from the National Health Council, and panel discussions including ‘How Can We Better Create Diversity in Clinical Trials’ moderated by Lori Abrams, Director, Diversity & Patient Engagement, R&D at Bristol-Myers Squibb.

CISCRP’s Medical Hero Kyle Bryant will also speak at the conference. Kyle’s story — published in CISCRP’s November newsletter — details his fight against Friedreich’s Ataxia (FA) and his organization’s fundraising cycling initiatives. Read about how Kyle places his piece in the “puzzle” of finding a cure for FA in his Medical Hero Spotlight.

Contact ellyngetz@ciscrp.org or call 617-725-2750 if you’re interested in attending the Medical Heroes Appreciation Dinner. Limited sponsorship opportunities are also still available to support the dinner event.

CISCRP Gears Up to Organize an Unprecedented Year of AWARE for All Events

As the AWARE For All program series enters its twelfth year of educating patients and the public about clinical research through award-winning, live community events, CISCRP is excited to be organizing five programs in 2016. This year, new AWARE For All programs will be held in Miami, FL, New Orleans, LA, Irvine, CA and a second annual program will be held in the Washington, DC area. Also on the agenda is CISCRP’s inaugural international AWARE For All program in London, UK scheduled for early March.  The CISCRP events team has been very busy planning and implementing these programs.

“A primary goal of the AWARE For All program is to introduce clinical research to diverse communities that may not have heard of it before, particularly those communities with low health literacy,” says Jill McNair, CISCRP Director of Education, Outreach, and Community Support. “That’s why bringing this program to new communities like London, Miami, New Orleans, and Irvine is so important.”

DSC_0308CISCRP will host the DC event at Howard University, opening its doors to educate both the college and surrounding communities. The senior events staff is now working in earnest to assemble planning teams of local health and research professionals in DC and the other cities.

Research shows that the general public has very limited knowledge of how the clinical research process works, what it means to participate, and the role that clinical research plays in advancing public health. Disparities in health literacy exist among people who may not see a doctor on a regular basis due to lack of health insurance or a language barrier.

Lack of insurance does not cause the same disparities in Europe due to a national healthcare system that provides every citizen access to medical care at no personal cost. Even so, most of the population knows little or nothing about clinical research and the ways it could benefit patients who have already received a standard of care without improvement. A recent CISCRP study entitled “Public and Patient: Perceptions & Insights” found the European public shows the lowest self-assessed general knowledge about the clinical research process and the lowest level of willingness to participate in clinical trials.

CISCRP community partner organizations in London agree that this type of event is a valuable interactive learning opportunity for the city’s public and patient DSC_0340communities.

“The AWARE for All programme can help patients, their relatives and the general public to understand what clinical research is all about”, says Jan Geissler, Director of the European Patients’ Academy on Therapeutic Innovation (EUPATI). “It not only allows us to discuss exciting medical breakthroughs, but also hear about first-hand experience from patients who participated in clinical studies.”

CISCRP will partner with AWARE for All national sponsors EMD Serono and Lupus Research Institute and other local sponsors to host the 2016 U.S.-based AWARE for All programs.  CISCRP is extremely grateful for the generous support from national sponsor Merck and local community partners in London. Sponsorship opportunities are still available for these important programs – learn more by contacting ellyngetz@ciscrp.org or calling 617-725-2750.