CISCRP, ACRP Collaborate on 5K Run & Walk Event To Recognize All Clinical Trial Volunteers

Research Professionals and the Public to Honor Study Volunteers Who Give the Gift of Participation in Clinical Research

Boston, MA and Alexandria, VA– The Center for Information and Study on Clinical Research Participation (CISCRP) and The Association of Clinical Research Professionals (ACRP), two independent non-profit organizations, are excited to announce the upcoming Medical Heroes Appreciation 5K Run & Walk in Atlanta to celebrate the volunteers who give the gift of participation in clinical research and to raise awareness about the importance of clinical research in advancing public health.

MedicalHeroes-4399CISCRP will hold the Medical Heroes Appreciation 5K Run & Walk in conjunction with the ACRP 2016 Meeting & Expo. The event will take place on Saturday, April 16, 2016 near the Georgia World Congress Convention Center from 6:30-8:30am. Participants are encouraged to register early as space is limited. To register, visit medhero5k-atlanta.eventbrite.com. On behalf of every 5K registrant, the Greater Gift Initiative will donate a vaccine to a child in need.

“Medical Heroes are the millions of people who help advance public health and medical knowledge by taking part in clinical trials each year,” said CISCRP’s founder, Ken Getz. “With the support of ACRP, we continue to recognize their gift, raise public awareness, and express our gratitude and admiration through this special event.”

Running and walking enthusiasts, and CISCRP and ACRP supporters, are invited to participate and attend the event. Proceeds from the 5K will support education and outreach programs to patients and families interested in learning more about the clinical research process.

“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.

CenterWatch, a leading provider of clinical trials information for both professionals and patients, is the event’s official media partner providing additional support in raising awareness about the 5K. “Clinical research volunteers truly are the medical heroes of our industry,” said CenterWatch COO, Joan Chambers. “Part of CenterWatch’s mission has always been to educate patients on the importance of clinical research so it was without hesitation that we offered our support to promote this exciting event.”

Check-in the day of the event begins at 6am; and the 5K Run & Walk will begin at 6:30am. For more information about the event, to volunteer, register or become a sponsor, visit ciscrp.org/medhero5k-atlanta. Questions about event registration should go to Maya Wise (617) 725-2753, e-mail medhero5k@ciscrp.org, or call toll free 1-877-MED-HERO.

**About CISCRP**

CISCRP is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. CISCRP provides free education and outreach to the general public and patient communities. Visit www.CISCRP.org for more information or to support CISCRP.

**About ACRP**

Based in Alexandria, Va., and founded in 1976, the nonprofit ACRP has a worldwide membership of research professionals dedicated to the safe and ethical conduct of clinical trials across the globe for new drugs, medical devices, and therapies in human subjects. Our mission is to provide global leadership to promote integrity and excellence for the clinical research profession. For more information, visit www.acrpnet.org.

**About CenterWatch**

Since 1994, CenterWatch, has been the recognized global leader in providing clinical trials information to a broad and influential spectrum of clinical research professionals ranging from sponsors and CROs to research sites and niche providers. For more information, visit www.centerwatch.com.

 

From the Editor, November 2015

The CISCRP team is finally winding down after a very active fall season! The team held three AWARE for All events in three major cities: St. John’s University in New York CityLoyola University Medical Center in Chicago, IL and the William and Ida Friday Center in the Triangle, NC. The results of the 2015 Perceptions & Insights study were unveiled with a webinar to discuss findings, and staff members have been busy presenting at conferences across the country.

I’m pleased to share that our staff is growing rapidly to support many exciting initiatives. This fall, we welcome four new members and two familiar faces to the CISCRP team. Audrey Birkett, Cynthia Korisky and Jennifer Clemens join Communicating Trial Results as Project Managers. Annick Anderson, Associate Director, Research Services, joins us full time, and Susannah Buzard, Special Programs Manager, returns to CISCRP after working in education. David Getz joins as the Finance and Operations Manager, and Bella Osmanov, UMASS Boston, joins CISCRP as our newest intern.

The 2nd Annual SCRS Run for the Heroes 5K in October marked our fifth Medical Heroes Appreciation 5K to be held in conjunction with a professional conference. Thank you to SCRS and DAC Patient Recruitment Services for their support. We are very excited for the two upcoming 5K events this spring at the ACRP 2016 Global Conference & Exhibition in Atlanta, GA and the DIA 2016 52nd Annual Meeting in Philadelphia, PA. In addition, there will be a 5K Run/Walk at the ISPE Conference on November 9 to benefit CISCRP. Bring your colleagues and register for a fun, active way to kick off the conference!

Finally, I’d like to extend a warm thank you to all of our supporters. Without your dedication and enthusiasm, our many programs and events would not be possible. As we move toward the holiday season, I wish you all the best and hope you will keep CISCRP in your thoughts.

 

Warmly,

Maya Wise

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Medical Hero Spotlight: Kyle Bryant

 

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Credit: Rick Guidotti

Getting the Wheels Turning for a Cure

When Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disorder, at age 17, he knew he had to do something, so he did the thing he knew best: he got on his bike.

He spent the first few years after his diagnosis challenging himself to achieve new personal records in cycling, both as a way of coping and proving to himself that he could still do what he put his mind to.

By the time he was 26, after riding from San Diego, CA to Memphis, TN, Kyle’s passion became so much more. That’s when the idea for rideATAXIA, a program of the Friedreich’s Ataxia Research Alliance (FARA), got wheels of its own. Kyle began organizing rides to fund FA research for his organization that now has locations in five states and plans rides across the country.

Catrike_700
Blake Andrews, SLOtography.com

“Hearing there’s no treatment or cure was a huge blow, so cycling and fundraising became our therapy— how we dealt with the disease and continue to deal with it,” Kyle says. And even though Kyle had to trade in his standard bike for a more handicap-accessible Catrike 700 model, it hasn’t slowed him down.

The same gumption with which Kyle started rideATAXIA also led him to begin participating in clinical trials. In his early twenties, Kyle volunteered for his first trial; and while the inpatient study required him to stay in a hospital bed and get his blood drawn up to four times a day, he didn’t mind.

He references a saying in the FA community that the cure to the disorder is a “puzzle” – all of the pieces are out in the world but it’s up to the community of researchers, patients, families, and supporters to put them together. Sitting in that hospital bed giving blood, Kyle says, was his piece of the puzzle.

Kyle continues participating in trials, trying out new drug and therapy treatments. And although his personal health doesn’t always improve, he always considers his participation valuable.

“There’s a chance that these drugs could be therapeutic for me, but that’s not why I participate. I participate because I want to push the science forward. There is no way to get these trials done without participants. Even if these drugs aren’t helpful for me now, it will help find something in the future,” he says.

Credit: Karen O’Brien

Participating in research gives Kyle hope, not only for himself but for future treatments and a potential cure for the disease that he’s built his life around fighting.

And he’s fighting alright— saying moderation “keeps us from reaching the extreme points of our potential.” And for someone who uses a wheel chair but still bikes cross-country and works out in a Cross Fit gym, he means it.

Already this year, he has biked up Mt. Evans, the highest paved road in the U.S., and says a European cycle tour could be next. As for clinical research, he will continue placing his piece in the puzzle, one rideATAXIA fundraiser and clinical trial at a time.

For more information about Friedreich’s Ataxia and rideATAXIA, please visit www.curefa.org.

To learn more about Kyle’s story, visit his website at www.kyleabryant.com.

UPDATE, January 2016: Kyle is honored and excited to be speaking at the third annual 2016 Patients As Partners conference in Philadelphia, PA this March. He will be speaking on a panel about patient networks and support programs. To hear from Kyle, along with other patients and clinical research professionals, register for the 2-day conference by visiting the Conference Forum webpage for more information.

 

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Second Annual SCRS Run for the Heroes Supports CISCRP’s Educational Initiatives

Clinical Research professionals laced up their sneakers and hit the road to recognize Medical Heroes at the 2nd Annual SCRS Run for the Heroes 5K.  The event was hosted in collaboration with the Global Site Solutions Summit on October 11.  All event proceeds support CISCRP’s Medical Heroes campaign to raise awareness of the important contribution made by study volunteers. CISCRP thanks both SCRS and DAC Patient Recruitment Services for their generous support.

“This is our second time sponsoring the walk and we’re pleased to do so based on the overwhelmingly positSCRS 5K Runnersive feedback and response we received last year,” said Steve Swanson, DAC president, Imperial CEO, and member of the SCRS Global Impact Partner board. “DAC is a strong advocate for the patient’s perspective in studies. Events that showcase and acknowledge the positive impact of study participation are important opportunities for us to support,” he said.

“It’s so very important that all of us recognize the millions of people who give the gift of their participation in clinical research each year to advance knowledge about disease and how to treat it,” said CISCRP’s founder and board chair Ken Getz.  “We’re grateful to SCRS and DAC for their support of the Walk/Run for the Heroes event .”

MedicalHeroes5K-logoThis is the fifth Medical Heroes Appreciation 5K to be held in conjunction with a professional conference. These events are a unique opportunity for professionals and members of the public to show their appreciation for clinical research study volunteers.  During the past 18 months, a growing number of patients and members of the public have been participating in the Medical Heroes events.

Check out the upcoming Medical Heroes Appreciation 5K events below:

If you are interested in sponsoring or participating in a Medical Heroes Appreciation 5K/Walk in the future, please visit our website and contact ellyngetz@ciscrp.org for more information.

 

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CISCRP Unveils the Results of the 2015 Perceptions & Insights Study

This Fall CISCRP will unveil the results of the 2015 global Public and Patient Perceptions & Insights study beginning with a webinar in late October followed by conference presentations and onsite company meetings.

The webinar on October 28 posed a unique opportunity for professionals from all over to tune in and hear directly from CISCRP Founder and Board Chair, Ken Getz and key leadership staff. CISCRP shared the recent study findings around public and patient perceptions, attitudes, and experiences in regards to clinical research, as well as the meanings and implications associated with these results.

With more than 12,000 respondents, the 2015 CISCRP Perceptions & Insights study is the largest global survey of its kind. The large response base allows CISCRP to conduct in-depth subgroup analyses by a variety of demographic and attitudinal variables including age, race & ethnicity, socio-economic status, disease condition, and global region.

In late 2015 and into 2016, CISCRP will be publishing the results of the study in special reports, peer-review journals and trade-press articles.

The 2015 Perceptions & Insights study offers invaluable insights for clinical research professionals — sponsor Perceptions & Insights_2.19.15 018_2companies, CROs, investigative sites, and other stakeholders – looking to more effectively engage their study participants as partners in the clinical research process.

Later this year and throughout 2016, based on a generous educational grant from Acurian, CISCRP will be holding onsite company ‘Roundtables’ to present and discuss the results of the 2015 Perceptions & Insights study.  As part of these programs, CISCRP will facilitate a discussion to generate concrete action steps.  Roundtable meetings are already scheduled at AbbVie, Boehringer-Ingelheim, Astellas and Takeda.

If you’re interested in learning more about the opportunity to host an exclusive roundtable discussion of the study results and their implication at your company, please contact Ellyn Getz at ellyngetz@ciscrp.org.

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Meaningful Ways to Support CISCRP This Holiday Season

On behalf of CISCRP, thank you to the hundreds of professionals and organizations that support our education and outreach initiatives. Each year CISCRP provides numerous live events, assistance programs, and materials designed to raise awareness, provide support, and educate patients and their families about what it means to be a clinical study volunteer and the important role that clinical research plays in advancing public health. To learn more about our internationally recognized programs and initiatives, please visit our Programs & Events page.

All of CISCRP’s education and outreach initiatives are offered free-of-charge to patients and the public. By doing so, we’re sending a strong message to patients and the public that there is always an independent, credible, and affordable source for information and assistance. One of the primary ways that we fund these initiatives is through your generous donations.

There are a number of meaningful ways to support our education and outreach programs this season.

Thank You Holiday Card ProductSend customized holiday cards to thank and acknowledge colleagues, clients, volunteers, or patients with a donation to CISCRP on their behalf.  These gifts go further by making a lasting impact.

“For client recognition season, Clinical Performance Partners takes pride in donating to CISCRP each year to support educational programs and outreach initiatives. Since the clients can’t accept gifts, it’s such a win-win for me to recognize them and make a donation to CISCRP on their behalf.” – Beth Harper, President, Clinical Performance Partners, Inc.

Make a matching gift through your company to double the impact of your donation.

Create a 5K Team! We are planning two Medical Heroes Appreciation 5K events in 2016 – one at the ACRP MedicalHeroes-3772Global Conference & Exhibition in April, the other at the DIA 52nd Annual Meeting in June. CISCRP offers a variety of company promotional opportunities with each sponsorship level. Email ellyngetz@ciscrp.org to learn more.

With your support, we can continue to:

  • Conduct thousands of manual searches for patients and their families to identify relevant clinical trials within their geographic area;
  • Provide culturally-sensitive, 6th-8th grade reading level educational brochures, videos, and books to tens-of-thousands of patients;
  • Place hundreds of educators in live public events, community centers, libraries and classrooms to talk about the clinical research process;
  • Collaborate with several dozen patient advocacy groups to provide written and live educational content about clinical research to their membership community.

As you look for ways to allocate your remaining 2015 budget, and as you plan your 2016 budget, please consider making a donation to CISCRP. Every donation – regardless of its size – will make a difference in our ongoing efforts.

Please contact Ellyn Getz, Senior Manager of Development, Fundraising and Events, at ellyngetz@ciscrp.org to get more details on these giving opportunities or to receive a detailed proposal. Please indicate whether there are particular initiatives of interest!

 

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Introducing the Medical Heroes Alumni Program

CISCRP has developed a new program designed for study volunteers who have completed participation to remain engaged as active partners with the clinical research enterprise.  Our Medical Heroes Alumni community will receive periodic updates and resources from CISCRP as well as a variety of mentorship and ambassadorship opportunities.Logo Final

Through primary research, CISCRP has learned that many study volunteers feel connected to the clinical research enterprise and have a special bond with the investigative site staff that is often severed after the final study visit. The Medical Heroes Alumni program reinforces that bond and builds on study volunteer energy and interest in sharing participation stories and educating the public.

The Medical Heroes Alumni program fosters a community of engaged study volunteers with a wide range of complimentary offerings. These offerings are designed to provide ongoing support, build relationships, and provide numerous opportunities for ambassadorship. Study volunteers receive a special Thank You and invitation to opt-in to a community of alumni peers. Community members can attend and speak at CISCRP events including AWARE for All– Clinical Research Education Day and they will have opportunities to participate in patient advisory board panels where they may review and comment on protocol designs and recruitment communications. Depending on their condition, alumni may also be invited to join editorial panels to review lay language trial results summaries and educational materials.

CISCRP provides an ambassador toolkit and works hand-in-hand with members giving them the training and support they need to go out in their community and share the value of clinical research participation at health fairs and community centers.

Ideally, the Medical Heroes Alumni Program builds a community of active and visible public education ambassadors.  In doing so, this special community will help put a face on clinical research and engender appreciation and recognition of the important and profound gift of participation to advancing public health.

For more information about the program and if you are interested in implementing the program as a new patient-centric initiative at the conclusion of your clinical trials, please contact mayawise@ciscrp.org.

 

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AWARE for All Returns to The Triangle, NC

The fourth AWARE for All program in the Triangle, NC was held on October 22, 2015 at the UNC- Chapel Hill William and Ida Friday Center. The Triangle community – including the public, patients, health officials, health care and clinical research 20151022162320-7361professionals came together to learn about the clinical research process and the vitally important role of study volunteers.

“Most participants are uncertain about the research process and of what to expect before they take part. Ultimately, CISCRP hopes to empower patients and the public to make more informed decisions about clinical research,” explained Jill McNair, Director, Education, Outreach and Community Support.

With the help of  dedicated community partners, AWARE for All offered a variety of health screenings during the program, including: diabetic foot tests, flu vaccinations, blood pressure, heart/stroke risk assessments, HIV rapid tests, cholesterol, asthma and respiratory, spinal screening with neck and shoulder massage, postural screenings, and chair massages. AWARE also informative presentations by20151022185506-7662 renowned clinical research professionals and local study volunteers. Click here to view the event handbook.  At the conclusion of the program, CISCRP held a Medical Heroes Appreciation ceremony to recognize all study volunteers in the NC community.

Generous funding for this event was provided by EMD Serono and the Lupus Research Institute– our 2015 national sponsors – Duke School of Medicine, Rho, Schulman Associates IRB, Walgreens, PMG Research, the Greater Gift Initiative, and Artcraft Health.

“We are proud to support AWARE for All and in doing so, help our diverse communities to reclaim their power and understand ALL their options so that they can make the best decision for themselves and their families,” stated Mark Stacy, MD, Professor of Neurology at Duke University.

Please email awareforall@ciscrp.org if you have any questions about this special program, or if you would like to bring AWARE for All to your community.

 

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