Letter from the Editor

Dear Readers,

I am excited to kick off 2018 with our latest newsletter, filled with articles and information about some key programs, initiatives, and events and that we’re looking forward to in this upcoming year. 

But first, I wanted to share that we’ve changed the name of our newsletter to “Partners in Clinical Research: For Public, Patient, and Professional Awareness and Engagement.” This change reflects the content of our quarterly newsletter, which is geared towards a wide variety of stakeholders in an effort to facilitate awareness, engagement, and partnership in the clinical research enterprise.

In this edition of our newsletter we are honored to be spotlighting Peter and Vicky DiBiaso in our Medical Hero Spotlight. This husband and wife team share their inspirational story of clinical trial participation for Parkinson’s disease and why they’re encouraging others to get more involved in clinical research.

We’re also giving readers a look at how our Communicating Trial Results service is providing sponsors with an effective tool for patient engagement. And we’re featuring WIRB-Copernicus Group in our Support Spotlight and sharing a bit about their organization’s commitment to patients and clinical research awareness. 

For those who have not yet had a chance to read the results of our 2017 Global Perceptions & Insights Study results, we’re including an article to summarize some of the key findings and data points from that study. We encourage our professional audience to utilize this survey data to help improve their own clinical research practices and elevate patient experiences with clinical trial participation.

I’m very excited to share that our calendar of events for 2018 is quite full. We have AWARE for All events scheduled in Washington, DC on April 19th, Los Angeles, CA on May 19th, Dublin, Ireland on October 17, and are working to finalize dates for AWARE for All events in Boston, MA and Atlanta, GA for the fall! We also have our Medical Heroes Appreciation 5K Run & Walkscheduled for June 25th in Boston, which will be held in conjunction with The DIA 2018 Global Annual Meeting. We are always looking for individuals and companies to get involved, so if you are interested in any of our events, please contact Ellyn Getz for more information.

Lastly, we’re featuring an article about the reactions from the release of our MT Pharmacy public service initiative. And if you haven’t had a chance to view the MT Pharmacy video yet, please do so, and help us to spread the word about why clinical trials are so important to the future of medicine.

Thank you for your continued support as we work to build greater awareness and education around clinical research.

Thanks for Reading,

Highlights from CISCRP’s 2017 Perceptions & Insights Study

Last year, CISCRP conducted a survey of over 12,400 public and patient respondents from around the globe to gather insights on their perceptions and insights on clinical research. This study, conducted in 2013, 2015, and again in 2017, serves to establish routine global assessments of public and patient perceptions, motivations, and experiences with clinical research participation in an effort to monitor trends and identify opportunities to better inform and engage the public and patients as stakeholders and partners in the clinical research enterprise. 

Annick Anderson, Director of Research Services, notes, “Sponsors and other clinical research stakeholders will be able to leverage the findings in this study to improve upon their own patient engagement strategies.”

The complete results of the survey have been summarized in 3 downloadable reports that can be found on the CISCRP website. Below are some of the highlights of the data gathered from the survey.

How do study participants first learn about clinical research opportunities?
Primary care doctors or specialists, research center doctors or study staff, and advertisements remain where study participants most often first learn about their clinical trial. Hispanics were more likely to learn of a study from their significant other, pharmacist or pharmaceutical company website. And younger people were more likely to have first learned of a clinical trial from online patient communities or through social media.

How important is it to be aware of clinical research studies in your own community?
In general, the majority (84%) of the public feels it is important to be aware of studies being conducted in their own communities. Notably, an even larger proportion (95%) indicates it is also important for their regular doctor to be aware of studies.

Why do people choose to participate in clinical trials?
Altruistic reasons and obtaining better treatment are the most common participation motivators followed by monetary compensation.

What information do people want to know before making a decision to participate? 
When considering participation in a clinical study, the most important information includes the potential risks and benefits (83%) and the study purpose (75%). More practical aspects closely follow such as the medical procedures required, confidentiality protection, physical site location, potential costs and reimbursements, length of participation, and access to a study summary.

How does knowledge impact clinical research perceptions?
People who are more informed about clinical research generally express more positive views towards the enterprise and want to be aware of clinical studies being conducted in their own communities. People who are less informed about clinical research are less likely to trust pharmaceutical companies, less likely to think clinical research is important to the discovery of new medicines, are less interested in being aware of studies conducted in their communities, and are less likely to think that clinical trials are safe.

Do people want to know the results of their clinical trial?
As found in prior studies, the majority (91%) of the public finds receiving a study summary after participation to be very important. Yet 53% of those who have participated in a clinical trial have never received a report or an update on the study results once it ended. Furthermore, about a quarter of study participants reported never receiving any updates while they were enrolled.

Would clinical trial participants be willing to participate in another clinical study and would they recommend participation to others? Similar to findings in prior years, the vast majority (94%) of clinical trial participants reported being willing to participate in another clinical study. And most would also recommend participation to others if appropriate.

These are just a few of the high level findings. CISCRP has published more detailed findings in reports and journal articles. To read detailed reports, please visit the CISCRP Website. If your organization is interested in looking at detailed custom analysis by subgroup (e.g., gender; disease severity; race; ethnicity; age) and by specific therapeutic area, please contact Annick Anderson at annickanderson@ciscrp.org.

Educating Local Communities: Spotlight on CISCRP’s AWARE for All Program

CISCRP’s AWARE for All flagship initiative is a fifteen-year-old, internationally recognized program developed to address health disparities and low levels of clinical research literacy. In an effort to integrate with local health systems and community outreach channels CISCRP works to bring together healthcare professionals, faith-based groups, minority community centers and leaders, researchers, patients, and members of the public. CISCRP’s AWARE for All program has visited and helped educate over 60 communities since its inception. AWARE’s schedule of events for 2018 includes Washington, D.C. on April 19, Los Angeles, California on May 19, Dublin, Ireland on October 17, and in Boston and Atlanta this Fall (dates TBD).

AWARE events typically attract between 300 to 600 patients and members of the public, including family members and caregivers. As a non-profit that does not conduct or recruit for clinical trials, CISCRP is uniquely positioned as a trusted source for grassroots education about clinical research participation. Through collaborations with over 200 community and health groups, the program is heavily marketed to minority populations that are severely under-represented in clinical trials. Of AWARE’s 18,283 total attendees, approximately 60% have self-reported to be a member of an underserved community group. Ellyn Getz, CISCRP’s Senior Manager of Development and Community Engagements notes, “With our internationally recognized program we seek to connect and educate local community members to empower and enable them to make informed decisions regarding their health care options.”

At every AWARE event, attendees are asked to fill out surveys. These surveys collect their demographic information as well as their attitudes regarding the usefulness of the information presented and the likelihood of their volunteering for a clinical research study, etc. This data proves to be a useful tool to improve the program. Consistently, our data has shown that 92% of AWARE participants are more likely to volunteer for a clinical study after they have attended our program (92% post-program vs. 43% pre-program), 95% of our attendees are likely to tell their family and friends about something they learned at our program, and 91% would consider suggesting that their family or friends participate in a trial.

Since 2016, CISCRP has been developing new add-on elements to the AWARE for All engagement campaigns to create awareness around clinical research and generate buzz leading up to the events. Most recently, CISCRP collaborated with Sanofi and Langland on the MT Pharmacy initiative, a pop up store that demonstrated what modern medicine would look like without clinical trials and study volunteers. Over 450 people visited the MT Pharmacy during the week it was open in Newark, New Jersey and around 120 of those individuals attended the AWARE-Newark program after their visit. The video of the award-winning MT Pharmacy initiative can be viewed on CISCRP’s Youtube Page

CISCRP plans to replicate this initiative globally to elevate knowledge and literacy about clinical research participation. CISCRP is also currently collaborating with Janssen and Wondros to develop a mobile unit that will travel around Los Angeles in the weeks leading up to the AWARE – LA 2018 program this coming May. The RV will contain interactive displays with information about clinical research, as well as information about the upcoming AWARE program at USC. 

One of the biggest take-aways from the AWARE for All campaign has been to cultivate a strong, dedicated team of local supporters to help steer and customize this initiative to be both culturally-sensitive and relevant to the local community. CISCRP looks to local organizations to support the program in a variety of ways: sponsorships, outreach assistance, health screenings, speakers, volunteers, and exhibitors. In exchange, organizations receive unprecedented visibility via event marketing, including branding opportunities on event collateral and materials. Please contact awareforall@ciscrp.org to learn more and to bring AWARE for All to your local community!

Couple Urges Others to Get Involved in Clinical Research

Peter and Vicky DiBiaso have both been professionally involved in clinical research for more than two decades. But their commitment took on new meaning in May 2015 when Peter was diagnosed with Parkinson’s disease.

Peter was only 47 when he first noticed a resting tremor in his right hand. Not long after, he felt stiffness in his right ankle. A marathoner and avid triathlete, he initially attributed the stiffness to overtraining, but when his symptoms persisted, he suspected the problem might be something more serious. He consulted a neurologist and was referred to a movement disorder specialist who made the diagnosis.

There is currently no cure for Parkinson’s, a chronic, degenerative neurological disorder. Peter’s doctor prescribed a medication to help manage his hand tremor. In addition, he recommended vigorous exercise, which research shows may slow the disease’s progression.

While those measures have helped, as industry professionals Peter and Vicky know that clinical research is essential to understanding and developing treatments for Parkinson’s and many other diseases. They also know that too often promising research that could result in life-changing new therapies is delayed or abandoned due to lack of volunteer participants. Following Peter’s diagnosis the DiBiasos turned to the Michael J. Fox Foundation for Parkinson’s Research to help them identify research opportunities.

Registering with the foundation’s trial matching tool has enabled Peter and Vicky to learn about studies for which they are candidates that are either online or near their Boston home. To date the couple has participated in two on-going observational studies both of which track a large, diverse cohort of people with Parkinson’s and age-matched control volunteers so researchers can better understand the disease’s progression.

In October 2017 the DiBiasos also participated in a biomarker study. In that study, researchers used a hollow needle to withdraw spinal fluid, which they are studying for potential genetic markers and differences that may exist between people with Parkinson’s and healthy control subjects. Researchers hope to use that information to develop future tailored treatments for Parkinson’s.

Vicky has participated in the same observational and biomarker studies as a healthy control subject.

“As a spouse you think, ‘What can I do other than be supportive?’ A lot of times people don’t understand that there is a role for healthy participants in clinical research,” she says.

Nor is supporting clinical research limited to trial participation. Peter and Vicky have twice run the New York City Marathon to raise funds and awareness for Parkinson’s research, and this year will climb Mt. Kilimanjaro for the same reason. As part of their Team Fox fund raising efforts, they also co-hosted a series of charity spin classes with CISCRP in Boston on March 3, to help raise clinical trial awareness.

In addition to helping researchers make headway against the disease, supporting clinical research is empowering Peter says.

“There are so many things that are out of our control, but our ability to make a difference helps our resolve,” he says.

For the DiBiasos, that’s the key takeaway.

“Get involved,” Peter advises.” There are things you can do. You may not be able to change the course of the disease, but you can contribute. I might not be able to find a cure, but I’ll be part of the effort to find one. If everybody participated in just one study we could reduce the development pipeline by years and increase our understanding by leaps and bounds.” 

CISCRP provides a variety of opportunities to get involved in clinical research outreach and awareness. These include participating in our Speaker’s Bureau, volunteering on our Editorial Panels and Patient Advisory Boards, sponsoring the development of new clinical research educational materials, and getting involved in our AWARE for All health events and Medical Hero Appreciation 5K Walk/Runs held in cities all over the world. To learn more about these opportunities and to get involved, contact Rachel Minnick, rminnick@ciscrp.org.

By: Shelly Reese