Inaugural Medical Heroes Appreciation 5K

Partnership with DIA to honor People Who Give the Gift of Participation in Clinical Research

We are thrilled to announce the launch of a new event — the Medical Heroes Appreciation 5K Run and Walk in San Diego — to celebrate the volunteers who give the gift of participation in clinical research. The walk will coincide with the Drug Information Association’s (DIA) 50th Annual Meeting. It will take place Monday, June 16, 2014 outside the San Diego Convention Center from 6:45-8:00am. Participants are encouraged to register online at www.ciscrp.org/med-hero-5k.

“Medical Heroes are the millions of people who help advance public health and medical knowledge by taking part in clinical trials each year,” explains CISCRP’s founder, Ken Getz. “This special event recognizes their gift, raises public awareness and appreciation, and hopefully will become an annual tradition.”

Running and walking enthusiasts and all supporters of CISCRP’s mission are invited to participate or attend the event to show their support. Proceeds from the event will support education and outreach programs for patients and families interested in learning more about the clinical research process.

Patients & Partners: Spotlight Product

Since 2004, CISCRP’s diverse library of videos has helped educate countless patients and their families considering participation in a clinical trial.

With eight different titles varying from a general introduction to clinical research to disease-specific titles aimed at minority audiences, CISCRP’s videos use culturally appropriate language to describe the trial process interspersed with firsthand patient accounts.

Available in a DVD format, as well as in an MP4 digital download for-mat, CISCRP’s DVDs make a great resource that sites around the world have purchased to lend out and even give out to their partici-pants. Many sites even purchase multiple titles to play in their waiting rooms. Pricing for our videos starts at $9.99 per copy, with quantity discount rates available. Click here to preview the Participating in a Clinical Trial video.

New CISCRP Study Reveals Improvements in Public Perceptions of Clinical Research and Insights Into Patient Participation Experiences

A new global study recently conducted by the Center for Information & Study on Clinical Research Participation (CISCRP), a Boston-based independent nonprofit, indicates that public trust and perceptions about clinical research and the people who participate in them have shifted and improved significantly during the past seven years.

The study, conducted online between January and March 2013 among a global community of health information seekers and clinical research participants, was designed to track changes in public perceptions and attitudes about clinical research and to gather new insights into study participation experiences. In total, nearly 6,000 people completed the survey making the 2013 Perceptions & Insights study one of the largest international surveys focusing on clinical research ever conducted.

Key findings of the study include:

  • Whereas 45% of the public said that they don’t trust research sponsors to inform the public quickly about safety concerns in 2005, only 28% do so in 2013;
  • In a 2005 Harris Interactive poll, 46% of respondents believed volunteers were gambling with their health by participating in a trial; the new CISCRP survey found only 23% of respondents agreed with that statement;
  • The Internet has now surpassed traditional media (newspaper, radio and television) as the largest source for information although the majority (60%) of study volunteers reports that they have not used social medial to learn about clinical research.
  • A high percentage of patients who were ineligible to participate in one clinical trial decided not to participate at all, instead of searching for other clinical trial opportunities

“It was critical to conduct this new study given the importance the clinical research enterprise now places on implementing truly patient-centered research,” said Kenneth Getz, the lead investigator for the study and the director of sponsored research programs at the Tufts Center for the Study of Drug Development (CSDD). “Despite the clinical research enterprise’s desire to better understand and engage patients, no large scale assessment of public and patient attitudes and perceptions had been conducted in more than seven years” said Getz.

CISCRP plans to conduct the international poll every other year to monitor and track changes in both public opinion about, and patient experiences participating in, clinical research. CISCRP has produced a series of reports containing detailed results of the 2013 Perceptions & Insights Study. These reports can be downloaded at www.ciscrp.org.


About CISCRP

The Center for Information and Study on Clinical Research Participation (CISCRP), founded in 2003, is a non-profit organization dedicated to educating the public and patients about the important role that clinical research plays in advancing public health. As part of its mission, CISCRP provides a variety of services designed to assist clinical research stakeholders in (1) understanding public and patient attitudes and experiences and (2) improving volunteer participation experiences and satisfaction.


Contact 

Laura Mercure
Marketing Manager
617-725-2750
LauraMercure@CISCRP.org

Quintiles Honored for Supporting Public Education

Boston, MA – July 2, 2010 – On Monday June 14, 2010 the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) held its 2010 Annual Meeting. CISCRP Board Chairman Ken Getz and President & CEO Diane Simmons recognized Quintiles as one of this year’s award recipients for “Supporting the Development of Educational Materials.”

Over the past year, Quintiles demonstrated its commitment to CISCRP’s mission and enabled the nonprofit to educate and inform the public and patients as well as medical/research professionals about the volunteers who give the “gift of participation” in clinical research studies. Quintiles’ support went to both a public education program and a professional education program.

The public program, known as AWARE for All-Clinical Research Education Day, was conducted in September 2009 for the Raleigh, Durham and Chapel Hill community. The culmination of a 4-month education and outreach process, this AWARE event provided free educational workshops and health screenings, an information alley/exhibit area, and breakout sessions that examined the state of clinical research and what is happening now. The program touched more than 25,000 households in this community with educational brochures, active contact with over 30 community partners, and the education of a distinguished honorary committee made up of politicians and local leaders. Grassroots community outreach through local churches, community and health centers, and other venues brought AWARE’s message directly to the public and patients.

The professional education program supported by Quintiles, “Voices of Medical Heroes: A Family’s Journey of Hope,” was held at the Washington Convention Center for close to 600 medical/research professionals on June 14, 2010. It featured John Crowley whose story inspired the movie Extraordinary Measures. Mr. Crowley’s children suffer from Pompe Disease, a rare neuromuscular disorder. During his presentation, John told the story of how he and his family navigated the challenging clinical trial process. “The time it takes for individuals to become qualified for studies and for studies to advance through the system is brutally difficult” for patients and their families, said John. But the fact that his two children are alive today is testament to the power of clinical research and their father’s unwavering dedication. John’s children continue to receive the enzyme therapy every other week; both depend on wheelchairs and ventilators and need full-time nurses. For John, that means the search for a better treatment continues. “Research is hope,” he said, and hope does not stand still. Accepting the award for supporting both these educational programs on behalf of Quintiles was Jim Kremidas, Vice President and Global Head of Patient Recruitment.


About Quintiles

Quintiles is the only fully integrated biopharmaceutical services company offering clinical, commercial, consulting and capital solutions worldwide. The Quintiles network of more than 20,000 engaged professionals in 60 countries works with an unwavering commitment to patients, safety and ethics. Quintiles helps biopharmaceutical companies navigate risk and seize opportunities in an environment where change is constant. For more information, please visit www.quintiles.com.


About CISCRP

The Center for Information and Study on Clinical Research Participation is a 501(c) (3) independent nonprofit located in Boston, Mass. CISCRP is dedicated to educating and informing the public, patients, medical/research professionals, the media and policymakers about clinical research participation and the role that each party plays in the process. CISCRP’s staff and board of advisors have highly diverse backgrounds – from the clinical research, healthcare and advocacy communities. CISCRP’s funding comes from a wide variety of sources including individual donors, government and research institutions, foundations and corporations. CISCRP is not involved in recruiting patients for clinical trials or conducting clinical trials. For more information, visit www.ciscrp.org.

Clinical Research Professionals Reach Into Their Personal Pockets and Raise $5K for CISCRP’s National Clinical Research Awareness Program

2009 Site Solutions Summit Attendees Help Further CISCRP’s Cause

Ellicott City, MD, October 22, 2009 – Clinical research professionals, including executives from leading Sponsors, clinical research organizations, and stakeholders from clinical research sites came together at the 4th Annual Site Solutions Summit and raised $5k in just a few short hours for the Center for Information & Study on Clinical Research Participation (CISCRP).

Over 240 attendees gathered for three days at the this year’s Site Solutions Summit, co-hosted by RxTrials Inc. and the Association of Clinical Research Organizations (ACRO), where discussions about the challenges in managing clinical research studies, sites and industry trends were shared and Best Site Practices identified.

At the request of Christine Pierre, founder of the Site Solutions Summit, conference attendees literally reached into their own pockets during the conference for loose $5, $10, $20 and $100 bills to give to CISCRP whose mission is to raise awareness and educate the general public about the process of clinical research. Pierre reminded attendees about the non-profit organizations’ need for industry support and stressed the importance for the clinical research industry to help further the cause. Every dollar raised will help support the communications, education, and public awareness programs at CISCRP.

“As an industry, we recognize how crucial it is for the general public to have a greater understanding of the clinical research process first and then to consider participation in a fully informed manner. Next: CISCRP’s mission. As the leaders of premier clinical research sites and others committed to clinical research it only makes sense that we, the voice of the sites, would support this effort,” said Christine Pierre. “I was humbled by the generous giving after spontaneously requesting those attending the Site Solutions Summit to support the CISCRP mission.”

According to CenterWatch, 94% of people recognize the importance of participating in clinical research in order to assist in the advancement of medical science, yet 75% of the general public state they have little to no knowledge about the clinical research enterprise and the participation process. Education and information about clinical research participation and the important role it plays in public health begins with CISCRP. CISCRP is working to create and promote a greater awareness and understanding about clinical research and how therapies get into the hands of the people who need them the most.

“CISCRP relies on its extensive network of volunteers and supporters,” said Ken Getz, Founder and Chairman of the Center for Information & Study on Clinical Research Participation. “We deeply appreciate the support that we’ve received from the Site Solutions Summit. This donation will help us in our efforts to provide educational materials to patients and the public.”


About RxTrials Inc.
RxTrials is a premiere network of Investigative Sites that conduct Phase II through Phase IV and vaccine clinical research studies in physician practice’s, clinics and hospitals. Since 1994 RxTrials has successfully competed over 1,000 clinical research studies and is a strategic partner with many clinical research organizations and sponsors and also is the co-host of the annual Site Solutions Summit. RxTrials Institute, a sister company of RxTrials, provides training, education and consultation to clinical research professionals and organizations.


About CISCRP
Founded in 2003, The Center for Information and Study on Clinical Research Participation (CISCRP) is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research participation and the role that each party plays as a participant in the process. CISCRP’s staff and board of advisors have highly diverse backgrounds – from the clinical research, healthcare and advocacy communities. CISCRP’s funding comes from a wide variety of sources including individual donors, government and research institutions, foundations and corporations.