USA Today Supplement on Clinical Trials Features Special Articles about CISCRP

As part of CISCRP’s ever-growing mass media campaign, The National Clinical Trial Outreach and Awareness Initiative, we published our most recent clinical trial-focused USA Today supplement on December 7th. This initiative falls under our renowned Medical Heroes Campaign, a public service movement dedicated to engaging the public in thinking differently about clinical research. The supplement reached over one million Americans through both print and digital platforms, educating them about the importance of clinical trials and promoting greater awareness of clinical research. Key print markets included New York, Chicago, Philadelphia, Phoenix, Houston, and Seattle, with a combined readership of 750,000 print readers in combination with our digital reach of over 1,000,000 readers.

Our most recent supplement contained a variety of informational articles and educational advertisements from organizations in the clinical research industry. Merck, Transcelerate, Eli Lilly, and Pfizer were among the major contributors to the supplement, providing content and valuable insight into recent trends surrounding patient engagement and advocacy.

We had a special opportunity to include a few CISCRP-focused articles highlighting the work of our Research Services Department, as well as announcing the release of the second edition of The Gift of Participation. This helpful book is written by our founder, Ken Getz, and will be published in the coming months. With these articles, we hope to bring visibility to the important services that we offer and make the most up-to-date information about clinical research available to the public.

We also included an advertisement thanking and honoring Medical Heroes who have given the gift of their participation in clinical trials to improve public health for all people.  Supporting this important message were organizations including Bristol-Myers Squibb, Janssen, Otsuka, Segal Trials, Biogen, Parexel, Allergan, UCB, Praxis, and EMD Serono.

Our feature story centered on Rachel Petties and her daughter, Alani, who is diagnosed with a rare genetic disorder called congenital, generalized lipodystrophy. Alani bravely battles this disease, which is characterized by total loss of necessary body fat tissues and abnormal storage of fat in various other areas of the body including major organs. She is currently enrolled in a long-term clinical trial program at the National Institute of Health aimed at finding ways to pre-screen for the disease, while identifying and addressing complications earlier on. The story also provided a glimpse into her mother, Rachel’s, everyday life advocating for her daughter and maintaining an inspiring level of commitment to finding a cure.

We will be publishing our next clinical trials supplement in June of 2019. There will be opportunities for sponsoring companies to contribute advertisements and/or editorial content. Contact Kat Marriott, kmarriott@ciscrp.org, for sponsorship options and for the chance to take part in the development of this next educational supplement.

Written by Katherine Marriott, Marketing & Communications Coordinator

From the Editor: Together We Can Make a Difference

One of the greatest joys about what I do (and for that matter, what everyone at CISCRP does) is that I truly get to help people. Our mission is to engage patients and the public as partners in the clinical research process. This means that we strive on a daily basis to make peoples’ lives better.

We achieve this goal through various means: hosting AWARE for All events that educate and inform; helping patients and families search for clinical trials in their area; conducting crucial research in our biannual Perceptions and Insights Study; creating educational brochures and videos about clinical research; providing lay language summaries of trial results for patients; and organizing a brand new fitness challenge to honor patients (see our article inside). 

That’s pretty incredible when you think about it. Increased literacy about clinical research and better patient experiences lead to improved study efficiencies and timelines. These, in turn, lead to better health treatments for all. What a profound effect we can have on public health!

Our nonprofit organization can’t do it alone, however. We rely on your charitable gifts to fund our initiatives. When you make a donation to CISCRP, you are teaching more people about what to expect when taking part in a clinical trial and where to find one. You are showing industry stakeholders what clinical research looks like through the eyes of the patient. You are delivering and making trial results easier to understand. You are recognizing study participants as Medical Heroes! 

As the year 2018 draws to a close, please consider making a charitable donation to CISCRP. With your gifts, we are able to continue these important and very effective initiatives. By ourselves we can make a dent, but together we can make a difference. 

Jim Keen,

Associate Director, Marketing, Promotion, & Outreach

Supporter Spotlight EMD Serono

Studies have shown that, when it comes to patient engagement in clinical research, there are three main factors that offer the highest returns: patient and professional advisory boards, social media engagement, and patient education programs. Many biopharmaceutical companies and CROs are working to adopt these kinds of patient engagement practices into their clinical research development strategies in hopes to achieve faster study planning; quicker approval and initiation timelines; higher randomization, increased recruitment and retention rates; fewer disruptions and delays; and more positive study volunteer satisfaction levels.

We are grateful to EMD Serono’s leadership to actively raise awareness and improve clinical research literacy. Their support for CISCRP’s AWARE for All: Clinical Research Education events since 2008 has enabled us to significantly enhance the reach of the program to diverse communities around the world, attract recognized figures in medical research, and appeal to policymakers to understand the importance of clinical research. Since their participation as a National Sponsor in 2013, over two million people have received educational materials about clinical research through print and electronic outreach. In addition, attendee surveys consistently report a high likelihood (96%) to share learnings about participation with friends and family.

EMD Serono has shown extreme commitment and a patient-centric approach in their clinical development program. CISCRP has witnessed this commitment through a strong collaboration with EMD Serono in multiple activities focused on bringing the voice of the patient to the center of everything they do. The Global Clinical Operations (GCO) team at EMD Serono has sponsored over a dozen CISCRP-moderated patient advisory boards across several therapeutic indications. The GCO team shares all valuable insights and information with their internal stakeholders with the objective to secure a patient-focused approach within the development and execution of clinical trials. 

Rodrigo Garcia, MD, MS, Head of Global Clinical Applications and Innovation at EMD Serono, sees this patient-centric approach as the foundation for every activity and initiative his group leads. “Science and patients’ voice should be synergistic forces driving the drug development process,” says Rodrigo Garcia, MD, MS.

We want to thank EMD Serono for their support and dedication to CISCRP’s mission, for helping to create awareness about the importance of clinical research, and for improving the overall patient experience.

Written by Ellyn Getz, Senior Manager of Development and Community Engagement

How Far Will You Go to Recognize Medical Heroes?

CISCRP has launched a first-of-its-kind virtual fitness challenge to raise awareness about clinical research and show appreciation for study volunteers. We invite you to join us in this Medical Heroes Appreci-a-thon!

We are collaborating with Racery, a virtual race platform, which powers fundraisers and virtual activity challenges. Participants can log numerous activities–from skiing to cycling to Zumba and many other types of intentional exercise–to earn mileage in our virtual race, which spans 399 miles of Route 66.

Registration is open for our Feb 1 through Feb 28 virtual event! Click this link to join a team or to register as an individual. All participants will receive digital bling and daily (opt-out-able) reminders to get up, groove, and log physical activity. In addition, participants will have an incomparable experience to physically challenge others from around the world, virtually visit landmarks along Route 66, and donate to provide education and outreach to patients and the public about clinical research. CISCRP will also award prizes to individuals, teams, and group winners, along with teams that show the most digital spirit.

Since 2014, CISCRP has organized Medical Hero Appreciation events to honor study volunteers and their contributions to improving public health. Our first 5K in San Diego, hosted in conjunction with DIA, welcomed over 250 people to Embarcadero Marina Park South. Since then, we’ve cheered on thousands of participants in early morning events. We’re excited to roll out this new fitness program as a part of the Medical Hero Appreciation event family, and we hope this can be a fun training module for any of our participants who plan to run/walk at our Med Hero 5K in San Diego on June 24.

How does it work?

Each mile or minute of exercise can be logged into our customized online portal. You’ll receive leader board updates on current standings, as well as where you’re virtually located on the course map. It’s a fun way to challenge, not only yourself post-holiday binge, but also to show support for CISCRP and to raise awareness of clinical research.

To register:

Here’s the link: www.medhero.org

Registration fees:

  • Regular Participation Fee: $15
  • Early Bird Registration Coupon (until Jan 11): $5 off registration with code: ebhappy
  • Participation + T-Shirt: $25

Questions? Contact us at medheroevents@ciscrp.org or 617-725-2750

We can’t wait to see how far you’ll go! 

Written by Ellyn Getz, Senior Manager of Development and Community Engagement and Johanna Walsh, Events Marketing Coordinator

—–

Our Virtual Platform Partner: Racery

An Appeal from Our Founder

Dear Friends and Colleagues,

Since 2003 CISCRP has been providing advocacy, education, and assistance for patients and their families considering participation in clinical trials. During the past 15 years we’ve established and expanded our initiatives and programs through generous donations from supporters like you.

Our award-winning international programs and initiatives include:

  • Print and digital educational brochures and resources
  • Community health education events
  • Medical Heroes recognition campaigns
  • Public service announcements
  • Educational mass media campaigns
  • Scholarly research studies
  • Educational webinars
  • Patient communications and plain language services

CISCRP provides all of its educational programs and resources free of charge to the public, to patients and their families. We do this to assure our independence, quality, and credibility and to ensure that our programs and resources are accessible and affordable.

But we can’t do it without your generous support. Your donations help us continue our work and create new, innovative and impactful educational programs and initiatives. In 2019 your generous donations will help support a number of important initiatives including:

  • A new online virtual fitness challenge recognizing study volunteers
  • An assistance program helping patients navigate online registries of clinical trials
  • A new edition of CISCRP’s The Gift of Participation book in public libraries
  • A science museum exhibit to educate elementary through high school aged children

Please consider supporting CISCRP today. Your contribution, no matter how small, makes a difference. Your tax–deductible donation can be made in the following of ways:

Online: Click here

Phone: 617-725-2750

Mail:
(Made payable to CISCRP)
One Liberty Square, Suite 510
Boston, MA 02109

Thank you in advance for your support.

Sincerely,

Ken Getz
Founder and Chair of CISCRP

From The Editor

Dear Readers,

Since I joined CISCRP a little over two months ago, I have been looking forward to writing this letter to introduce myself to you. Although I am new to the organization, I have long been aware of the important work CISCRP does to engage patients and the public as partners in the clinical research process. Now, I get to be a part of the action.

Before joining CISCRP, I spent over 20 years running Cliff Keen Athletic, an athletic uniform company, where I cultivated relationships and marketed our merchandise and equipment nationally and internationally. During this time, my company sponsored numerous tournaments, teams, and associations. Additionally, I taught in the field of education for 8 years. At CISCRP, I now combine the best of both of those worlds, educating the public about clinical trials and collaborating with a broad spectrum of people and organizations dedicated to improving healthcare. I have a BA in Communication and an MA in Educational Studies, both from the University of Michigan.  

At CISCRP, I get to work with an amazing team of professionals who are passionate about helping others. Many of you are already familiar with our marketing and outreach coordinators, but I’d like to take a moment to reintroduce them. 

Leslie Perez earned her BA in Sociology and Communication from the University of Massachusetts, Boston. While in school, she developed a passion for non-profit work. At CISCRP, Leslie provides support in all areas of marketing and outreach, including email and event marketing, patient engagement and alliance initiatives, and managing CISCRP’s social media presence.

Katherine “Kat” Marriott holds a BA in Business Marketing from the Isenberg School of Management at UMASS Amherst. Just prior to joining the CISCRP team, she spent three years working as the Assistant Director of Marketing and Outreach at the North American Thrombosis Forum, a healthcare non-profit founded by cardiologists at Brigham and Women’s Hospital to spread awareness and preventative education about blood clots. At CISCRP, Kat is in charge of bringing our USA Today supplements to fruition, heading up our Ambassador Program, and many other valuable aspects of marketing support and outreach.

Our newest member of the CISCRP organization is Johanna “Jo” Walsh. Jo works alongside the Events and Marketing teams as the Events Marketing Coordinator. She is a graduate of Roger Williams University, with a BA in Media Communications and a minor in Marketing. Her role is to promote special events as well as engage in community outreach. Jo is in charge of creating all promotional materials and advertisements for our “AWARE For All,” “Medical Heroes Appreciation 5K,” and “Amplifying the Patient Voice: Round Table” events.

I know you will be as impressed with these individuals as I am. They are dedicated to serving you, as are all the people working hard at CISCRP. 

Please enjoy this issue of “Partners in Clinical Research,” where we feature a family whose compassion and donation to science will help to fight an incurable disease. We also take a moment to highlight one of our great supporters, EMD Serono and our work with The Foundation for Peripheral Neuropathy. Also in this issue, we give you the inside scoop on the release of CISCRP’s new video that documents the travels of our “Journey to Better Health” RV that raises awareness about the importance of diversity in clinical trials. And don’t miss our important articles on the work we’re doing with Editorial Panels in reporting Clinical Trial Results, plus other ways to get involved with CISCRP.

Thanks for reading,

Jim Keen

A Final Gift – A Donation to Science Helps Fight an Incurable Disease

At a CISCRP Patient Advisory Board meeting in January that focused on an incurable brain disease called Progressive Supranuclear Palsy (PSP), Dave Potter met Alex Klein, Vice President of scientific affairs at CurePSP. Potter, the facilitator of a PSP support group near his home in the Cleveland, Ohio, area, got Klein’s contact information in case he needed it for the future. He did, in a way he couldn’t have imagined at the time.

A few months later, Potter would seek out Klein after receiving a remarkable request from the family of Connie Shippitka. Connie did not have long to live from the effects of PSP, and the family wanted to donate her brain for research into the rare disease.  They didn’t know how to go about making the donation, however, and turned to Potter for help.

“It was an honor and a privilege that they called me,” he said.

Recalling that he had met Klein at the CISCRP meeting, Potter reached out to him to explain the situation. Time was of the essence, as a viable donation can only be made within a day or two after death. But Klein worked with the family to ensure that all the necessary steps were taken, such as having signed medical release and consent forms and securing the services of a pathologist for the donation.

Although advanced planning is preferable, Klein said that many families, overwhelmed by the responsibilities of caring for a loved one, wait until the end stage of the disease before initiating the donation process. He also acknowledged that many people have difficulty facing a decision that serves as a stark reminder of the nature of a disease whose complications can lead to death. But he said patients and families appreciate the chance to help with drug development and provide insight about the disease that cannot be discovered any other way.

“They create their own legacy in science,” said Klein, noting that samples from a single brain can be studied by dozens of researchers.

Connie Shippitka died in May, and her brain was donated to the Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, FL. Her daughter, Melanie Shippitka McCoy, said that her mother wanted to donate her brain so that other people could be helped. And knowing her mother’s wish could be fulfilled provided solace for her and her father, John. Indeed, both of them went to the funeral home when the pathologist arrived to harvest the brain, so they could feel part of the process and pay tribute to Connie’s generosity.

“The fact that they can study the brain, if there’s anything to be gleaned to help someone, it means the world to my dad and me,” Melanie said. “She had no voice for so long, but in this way, she had a voice.”

Melanie recalled the strength and sacrifice of her father, who became a full-time caregiver for Connie soon after she was diagnosed with PSP, which affects brains cells that control functions like walking and speech. Through the struggles of managing the disease, her parents found practical advice and emotional connection by attending the support group led by Potter.

Potter had cared for his mother, Beverly Potter, who died in 2014 after being diagnosed with PSP a few years prior. He has seen people like himself who have more experience with the disease help those in its earlier stages. He said he had a special bond with Connie, who reminded him of his mother, and was grateful that he was able see her shortly before she died. And Potter also was grateful to play a role in her quest to prevent others from facing the debilitating effects of a disease that researchers can now study further thanks to her final gift.

Written by Lewis Rice, Senior Editor of Patient Communications

 

Ensuring High-Quality Plain Language Summaries: The Role of CISCRP’s Editorial Panels

Since 2003, CISCRP has developed educational content about clinical research that is written in plain language for study volunteers and the public. Our Communicating Trial Results program develops Lay Language Summaries, and we also help researchers ensure any document, website, or other communication is understandable and easy to use for the intended audience.  

The process for creating our high-quality deliverables is thoughtful, evidence-based, and rooted in community-engagement. A key component of this process is the Editorial Panel review, which plays a critical role in connecting the voices and experiences of key stakeholders. Read on to find out why these Editorial Panels are so important, what they are, and how you can become involved.

Why do we have Editorial Panels?

During the development process of the plain language materials, CISCRP includes the perspectives and experiences of patients, advocates, and healthcare professionals. It is critical to include the voices of those who have a stake in clinical research, particularly patients and advocates. Our Editorial Panel participants provide insight into how to best communicate clinical trial results and the clinical trial experience in a way that is accessible and relevant.

The goal of our Editorial Panels is to improve all plain language documents before they are finalized and distributed to patients of clinical trials. In fact, every Lay Language Summary that CISCRP develops is reviewed by an Editorial Panel.

What is an Editorial Panel?

Editorial Panels include individuals from three core groups:

  • Patients and the general public – we include feedback from those with clinical trial experience, and those who are not as familiar with the process in order to capture a variety of perspectives.
  • Patient advocates – local, community, and national advocates from patient advocacy agencies and organizations can help improve how CISCRP communicates the trial results by sharing their insight and emphasizing key information on behalf of their communities.
  • Health professionals – this group can include clinical research professionals, physicians, nurses, and others who utilize their clinical experience and knowledge to ensure that the summaries are clearly written and scientifically accurate.

Editorial Panel participants volunteer their time to review a variety of plain language materials and provide their feedback. We welcome people from all over the world to volunteer. If you are interested in participating or would like to learn more about this opportunity, please feel free to contact Rachel Weitzner, our Editorial Panel and Engagement Associate. She may be reached at rweitzner@ciscrp.org or by phone at 617-725-2750 x108. If you are interested in learning more about the services offered by CISCRP’s Communicating Trial Results department, please contact Jay Matthews, our Business Development Executive, at jmatthews@ciscrp.org.

CISCRP Offers Opportunities for all Members of the Community to Get Involved

CISCRP is relaunching a special “Volunteer Network” offering members of the community an opportunity to get involved in the nonprofit’s mission to educate the public and patients and engage critical stakeholders as partners in the clinical research process. This network will enrich the study volunteer experience, shift public perception around clinical trial participation, and improve public awareness and engagement. 

CISCRP has always been grateful to have the help of volunteers from all different backgrounds, and as the organization has grown, so too have the programs. Today they are better defined than ever before. To be inclusive of the whole community, which includes professionals, patients, and caregivers, CISCRP’s programs have been revised to include a Medical Hero Alumni Community and an Ambassador Network.

The Medical Hero Alumni Community caters to clinical research participants, and their friends and family, encouraging them to share their personal experience and insight. There are various ways in which Alumni can contribute. Volunteers have the option to join a Patient Advisory Board to review study protocol design, participate on an Editorial Panel to review lay language summaries, or enroll in a Patient Clinical Trial Journey Workshop. CISCRP provides Alumni educational materials and resources to build awareness in their communities. With ongoing support, they can confidently host booths at local health fairs, libraries, educational institutions, and other public venues. Alumni are also welcome to attend and/or speak at CISCRP’s events, including Medical Hero Appreciation 5Ks and AWARE for All. In addition, Alumni are encouraged to submit a personal story to be featured in the “Medical Hero Spotlight” section of CISCRP Quarterly Newsletter.

The second part of CISCRP’s Volunteer Network is the Ambassador Program. Newly tailored to industry professionals, Ambassadors are welcome to share their expertise about clinical studies in settings that focus on improving clinical research processes and advocating for study participants. This program gives professionals an outlet where they can continue to use their talents to make a real difference in public health outside of their everyday work responsibilities. Examples of ways Ambassadors can help are: join a Speaker’s Bureau; present at CISCRP-hosted AWARE for All events; host booths; share CISCRP’s educational materials and resources; and serve on the organization’s event planning teams.

CISCRP also creates opportunities for the general public to get involved. Opportunities include supporting CISCRP’s upcoming events, sharing CISCRP’s PSA videos, or simply making a donation.

If you are interested in learning more about the Volunteer Network, please contact Kat Marriott at kmarriott@ciscrp.org.

Written by Kat Marriott, Marketing & Communications Coordinator

The Foundation for Peripheral Neuropathy Supports CISCRP’s Patient Advisory Boards

We are very excited to be featuring The Foundation for Peripheral Neuropathy (FPN), a public 501(c)3 charity foundation whose mission is to dramatically improve the lives of people living with Peripheral Neuropathy (PN). FPN has collaborated with CISCRP’s Research Services on several Patient Advisory Board meetings by helping to identify eligible patients to participate and by contributing directly to the discussion. Patient advocacy group involvement is critical to the success of Patient Advisory Boards and other engagement initiatives, given their intimate knowledge of the needs and preferences of the broader patient population.  

The first time many people hear of Peripheral Neuropathy (PN) is when they or a loved one are first diagnosed with the condition. It is a very common condition, with an estimated 30 million Americans affected and many more around the world. However, there are remarkably low levels of public awareness of PN given the number of patients who have it.

The Foundation for Peripheral Neuropathy (FPN) follows its mission by:

  • Serving as the premier resource of information for patients, their families and healthcare providers
  • Accelerating a cure for Peripheral Neuropathies
  • Funding collaborative efforts of leading scientists
  • Raising awareness of Peripheral Neuropathy

In just over ten years, FPN has grown from a fledgling organization to become the premium source of PN information and research nationwide. Public support is essential to enable the Foundation for Peripheral Neuropathy to carry out its goals and help the millions of PN patients lead better lives.

To learn more about this debilitating condition, please visit www.foundationforpn.org or contact the foundation staff at info@tffpn.org or 847-883-9942. If you are part of a patient advocacy group and are interested in learning more about collaborating with CISCRP on a Patient Advisory Board, please contact us at annickanderson@ciscrp.org or 617-725-2750 ext. 400.

Written by Nova Getz, Research Associate