The weather is starting to cool and as fall greets us, it is a wonderful time to reflect on the events of the past year and begin to gear up for new and exciting opportunities ahead. I’d like to introduce myself as the new Editor of the Patients as Partners Newsletter. I’m thrilled to have the opportunity to share exciting news and updates about CISCRP through this platform and want to thank you in advance for your readership.

2016 has been a tremendous year of growth for CISCRP’s educational programs and patient outreach initiatives. Among our many initiatives, a few highlights: We held a record number of AWARE for All events this year, including our first international program in the UK; hosted two Medical Hero Appreciation 5K Events, both of which welcomed over 300 runners/walkers each; co-hosted the first “Inspiring Hope” Ideathon to generate innovative ideas to raise clinical research awareness; conducted thousands of free clinical trial searches for patients; participated in countless speaking engagements, webinars, and symposium; and distributed thousands of educational materials to sites and organizations world-wide.

This year has also seen significant growth in our Communicating Trial Results program and in our Patient Advisory Board services. More and more companies are turning to CISCRP for assistance in improving their patient engagement capabilities.

In 2017, we will be holding AWARE for All events in New Orleans, Seattle, Houston, Jacksonville, and in Manchester, England and Toronto, Canada! Check our upcoming events page for date announcements!
As a final note, I’m delighted to announce that CISCRP is moving! As our organization continues to grow and expand, we are excited to move into a larger office space within the Boston area. The move is planned for early 2017 and we will be sure to share our new address and location with our supporters as soon as the details are finalized.

As I reflect on an exciting year behind and ahead, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators. We are so thankful for your dedication to helping us raise awareness and education around clinical research!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,

Rachel

Dear Readers,

We are well into the New Year and 2017 is shaping up to be an exciting year for CISCRP, our educational programs, and our patient outreach and engagement initiatives.  I have some updates and information to share with you as we look to the year ahead of us.

This quarter’s newsletter will introduce a new “Supporter Spotlight” piece that we will include in each edition moving forward.  This will be an opportunity for us to feature a new CISCRP supporter and highlight their work and successes within the clinical research education and outreach space.  For our first spotlight piece, we are featuring Jennifer Byrne of PMG Research, who has been a long-time supporter of CISCRP.

As always, we have included our Medical Hero Spotlight piece, and this quarter we have the pleasure of introducing you to T.J. Sharpe, a Stage IV melanoma survivor, who shares his experiences with different clinical trials and how they ultimately saved his life.

We are delighted to highlight one of our growing Medical Hero Recognition initiatives, a program that includes publications in major national newspapers and one that helps to recognize and thank study volunteers for their participation in clinical research.

We have also included an article on CISCRP’s role in an exciting and important new grant project being spear-headed by the Lupus Foundation of America.  We are part of a team who is developing a new model for improving minority awareness and participation in lupus clinical trials.  Stay tuned for future updates on this ground-breaking initiative.

Lastly, we have some incredible ideas and options for how our community members and supporters can get more involved with CISCRP, be it through use of our educational materials or through creative ways to engage with us.  We want to work with you, as partners, in providing greater outreach and education to the clinical research community, patients, and the public.

In upcoming events news, CISCRP is gearing up for two Medical Hero 5K Walk/Run events on April 29^th in Seattle WA and June 19^th in Chicago, IL.  We are also hosting our first AWARE for All Clinical Research Education day of 2017 on May 12^th in Houston, TX.   Be sure to check our Upcoming Events page for new AWARE for All city and date announcements, coming soon!

As we gear up for the year, I want to note that all of our efforts are made possible by you, our generous supporters, donors, and collaborators.  We are thankful for your dedication to helping us raise awareness about clinical research and the importance of clinical trial participation!

I wish you all the best and hope you will keep CISCRP in your thoughts.

Thanks for reading,

Rachel

CISCRP’s Educational Center is a free online resource for learning more about clinical research and clinical trial participation.  The education center contains a wealth of information to inform patients and the public about clinical research, including FAQs, interactive videos, volunteer perspectives, charts and statistics, downloadable reference guides, and much more.  We encourage potential study volunteers to spend some time educating themselves about clinical research before making an informed decision to participate.  And we encourage sites and researchers to direct study volunteers to our site to learn more about clinical trial participation and the overall clinical research process.

Our education center is always growing and evolving to ensure that we have relevant and timely information about clinical trials available to patients and the public.  We are pleased to introduce a new set of digital brochures that will soon be available in the Education Center on the topics of “Taking Part in a Clinical Trial” and “Let Us Recognize and Thank Study Volunteers.”  These are intended to help patients and family members become more informed and educated about clinical research.  They can also be used as a reference by sites and research institutions.  These will be available to download so that patients may take them as a reference when speaking to their study staff about a clinical trial or to their doctor about clinical research participation options.  They will also be available in print form through the CISCRP Store.

These new brochures were developed in sponsorship with INC Research; a leading global contract research organization (CRO) (www.Incresearch.com).  Christine Phillips, MSc, PhD, Senior Director with INC Research comments, “INC is pleased to work with CISCRP to bring new educational pieces to the CISCRP Education Center and Store.  We plan to use these new brochures at our own sites to give patients access to more information about clinical trial participation and the importance of recognizing study volunteers as “medical heroes.””

CISCRP is pleased to provide these and other valuable resources to patients, family members, and the general public so that potential study volunteers can educated themselves and their support team on the clinical research process.  Providing clinical trial education is key to empowering patients to feel that they are engaged and valued partners in the clinical research process.

All of our educational brochures are available to purchase in print form through the CISCRP Store.  We also offer co-branding options for all of our Store materials for sites or companies who wish to add their logo and contact information to the material.  Contact CISCRP for more information!

We are always looking to expand our library of materials and encourage more companies to reach out to CISCRP to develop new educational materials.  Below is a listing of our current brochures and content.  If your company is interested in sponsoring the development of new content, please contact Rachel Minnick at rminnick@ciscrp.org or 617-725-2750 x330.

By Ellyn Getz

Our supporters have structured their philanthropic campaigns in many creative ways, from product licenses for educational content to point-of-sale programs where a specific percentage or dollar amount is allocated to CISCRP. We also hold many high-profile special events during the year and welcome business sponsorships.

In 2016, we received many exceptional and unique suggestions that companies implemented as ways to support CISCRP’s educational and outreach initiatives.

Here are just a few ways that a number of members in our Circle of Supporters built support for CISCRP into their budgets and campaigns:

Every Holiday Card Share = Donation to CISCRP
INC Research developed an end-of-year holiday card campaign to spread good cheer…while increasing clinical research literacy in the process. Every time their digital holiday card was shared, INC the donated $1 to CISCRP. Thanks to INC and their supportive community, they generated a $5000 end-of-year donation for CISCRP that will be put towards 2017 education and outreach programs.

USA Today Editorial Piece: In-Kind Marketing Support
Each year, CISCRP develops a full-page ad to thank study volunteers – Medical Heroes – in a USA Today supplement. In both 2015 and 2016, Praxis has donated in-kind marketing support to develop and publish this important educational content.

Piggy-Backing a Team-Building Activity, with Free Breakfast & Backpacks for All
DrugDev decided to take their Medical Heroes Appreciation 5K support to the next level in 2016. They exceeded their 100-person goal by inviting all of their employees and their families to participate in the Philadelphia-based 5K. DrugDev welcomed all participants by sponsoring a free breakfast and distributing branded backpacks as part of the 5K give-away packets.

Leveraging Current Marketing Momentum to Build Excitement
The Segal Institute not only shared their excitement to host sponsor an AWARE for All in Miami by sending an army of Segal staff to volunteer onsite at the program, covering parking for all attendees, and sending out a text message to their entire patient database with an invitation to be honored at the upcoming free educational program – they also donated public transit ad space that they normally used to promote their research program for a whole month leading up to the event.

Amplifying the Patient Voice – Hosting Global Road Shows
CISCRP hosts roundtables in the US and Europe to present new data and insights on public and patient attitudes and experiences, and since 2014, Acurian has sponsored 2.5 hour interactive roundtables, open to regionally-located professionals. Recently, Acurian proposed hosting onsite meetings at pharmaceutical company headquarters, as a session during a company-wide conference. The two teams have co-presented to five different companies in the past year, offering robust data analyses and application to aid engagement decisions among clinical operations teams.

Further Incentives to Participate in Online Industry Surveys and Visiting Booth at Conferences
Advanced Clinical conducts a number of industry surveys on innovation and technology. As a further incentive for individuals to participate, Advanced Clinical promotes offering a donation to CISCRP on their behalf. Additionally, Advanced Clinical invites individuals to their exhibit booth at trade conferences and offers to give them a Medical Hero button as well as make a donation to CISCRP on their behalf.

How Can We Count on Your Help and Creativity in the New Year?
CISCRP is looking to connect with new supporters for 2017/2018 patient-engagement initiatives. We have a number of ideas – like hosting a team-building, highly-visible 5K on your company’s campus, sponsoring AWARE for All events abroad, developing new educational content and programs, etc. – and we welcome your creative and innovative ideas as well! To start the process and discuss ways in which your company can support our mission of engaging patients as partners in the clinical research process, please contact ellyngetz@ciscrp.org or call 617-725-2750 x320. We can’t wait to work with you!

By Rachel Minnick

When Don Simmonds was diagnosed with Parkinson’s Disease at age 73, clinical trials were on the forefront of his mind. Upon his first meeting with his specialist, Dr. Goetz suggested that Don would be a good candidate for a clinical trial. A quick exchange with his wife Noreen made the decision to participate clear – “she said, ‘if you’re not going to do this, we’re going to have a talk,’” he said. “I didn’t want to have a talk so I signed up.”

Don describes Parkinson’s as a “highly individualized disease” – people with the disease can experience a broad range and severity of symptoms, leaving a lot to still be learned by doctors and scientists. Don is happy to step up and be part of that movement toward new treatments and a cure, saying it’s “the least [he] can do,” especially because the slow progression of his disease makes its effects “minimal” on his daily life.

Don feels empowered to do his part in the Parkinson’s research arena by participating in clinical trials. If he didn’t, he says, then who would? He shared a shocking statistic that resonates with our work at CISCRP; only 1% of Parkinson’s patients participate in research, he tells me. “I’m happy to be part of the 1%,” he says. “I may not be part of the wealthy 1%, but it’s this that really matters to me.”

And being part of clinical studies doesn’t just benefit the research community. Right now, Don is taking part in a 3-year study on cognition in Parkinson’s Disease patients, a topic that’s fascinating to him as he enters his final year in the study. “I’m curious to see my results. I feel pretty sharp so it will be interesting to see if I’ve lost some cognition during the past few years.”

Aside from his role as a clinical trial participant in more than 7 studies, Don does even more to support research by volunteering as an advocate for the Parkinson’s Disease Foundation (PDF).

Shortly after his diagnosis, a chance to complete training and become a PDF Parkinson’s Advocates In Research (PAIR) member provided him the unique ability to connect with other People with Parkinson’s across the United States and spread information about the disease with others in support groups and in public places like hospitals and libraries. A minister in his younger life, Don enjoys the opportunity to speak out about important issues and help those who share a similar struggle.

Don – with Noreen by his side – does his important work in his local Chicago area and around the country. They attended the World Parkinson’s Congress in Portland, Oregon in September, and Don has shared his story at numerous meetings and events, including CISCRP’s AWARE for All Chicago program in 2015.

Don hopes to keep “pitching in” and doing what he can to support Parkinson’s research. “It’s rewarding,” he says, to know that just one person can make a difference – for the advancement of medicine and for the millions of other People with Parkinson’s who benefit.

By Rachel Minnick

Since 2009, CISCRP has been working with pharmaceutical, biotechnology and medical device companies to create and disseminate plain language summaries for clinical trial participants under its Communicating Trial Results program. During the past seven year we have seen tremendous interest and growth in the program as more sponsor companies pilot and adopt this initiative among their patient engagement practices. There has been a significant call-to-action to include Communicating Trial Results programs to support clinical trial transparency, and to demonstrate that study volunteers are valued partners in the clinical research process.

At the present time, CISCRP is working with more than 30 major sponsor companies to provide trial results summaries on a study-specific basis and increasingly under portfolio-wide arrangements. CISCRP’s plain language summaries are offered in paper and digital formats.

Communicating Trial Results programs are essential to building trust among patients. Many sponsors will soon be a required to submit their lay language summaries to the online EU Public Portal under the new European Union Clinical Trials Regulation. Although the FDA has not mandated that sponsors provide lay language summaries, a growing number of companies anticipate that doing so will become a standard practice in the United States.

During the past 24 months, CISCRP’s team supporting the Communicating Trials Results program has grown dramatically. The team includes dedicated regulatory writers, senior editors with expertise in plain language communication principals, and patient representatives.

Jill McNair, Senior Director of Patient Engagement who oversees the Communicating Trials Results program at CISCRP, remarked “We’re working with a growing number of sponsor companies who recognize that communicating trial results is not only the ethical thing to do but also the right thing to do. We’re helping sponsor companies integrate this important process into their clinical research operations to drive higher levels of patient engagement.”

CISCRP is also leveraging its well-established Communicating Trials Results processes and dedicated editorial panels to help companies apply similar principles to other important plain-language clinical trial communications including informed consent documents, risk management summaries, and ongoing communications.

CISCRP’s is honored to have its award-winning Communicating Trial Results program recognized as a leading service and an emerging standardized practice. For more information, contact Jill McNair (JillMcNair@ciscrp.org) or go to Communicating Trial Results.