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

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

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! 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

• Racery powers charity virtual races that have fundraising and leader boards.
• Rather than trying a virtual English Channel Swim or virtual Mount Everest stair climb, CISCRP uses Racery’s tool for creating custom virtual race routes.
• Participants can log skiing to cycling to zumba and many other types of intentional exercise to earn mileage in the virtual race.

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:

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

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