INC Research and CISCRP Announce Keynote Speaker for “Inspiring Hope” Ideathon Event to Help Raise Awareness of Clinical Trials

Cancer “Thriver” and Clinical Research Advocate Jameisha Brown to speak about the importance of “Hope” in her keynote address

RALEIGH, N.C., July 19, 2016 (GLOBE NEWSWIRE) — INC Research Holdings, Inc. (Nasdaq:INCR), a leading, global Phase I to IV contract research organization, together with the Center for Information and Study on Clinical Research Participation (CISCRP), a non-profit organization dedicated to engaging the public and patients as partners in the clinical research process, today announced cancer “thriver” (reflecting her triumph over cancer and striving to live the best life possible following diagnosis) and clinical research advocate Jameisha Brown will be the keynote speaker at the upcoming “Inspiring Hope” Ideathon event being held Sept. 27-28 at District Hall in Boston. Ms. Brown will open the event with her keynote address, “Living Proof of the Power of Clinical Research,” sharing her own personal story of battling cancer, her inspiration for hope and her first-hand experiences as a patient participating in clinical research.

For the last two years, Jameisha “Meisha” Brown, M.S., CHES has been selected as a “Cancer Advocate,” one of the youngest in the history of the American Association for Cancer Research, the oldest, largest and most comprehensive cancer research professional organization. She has had the distinct privilege of sharing her cancer journey, community advocacy and research interests as a nationally-recognized inspirational speaker on numerous platforms and media outlets. Ms. Brown is pursuing a PhD in health education and a certificate in non-profit management at Texas A & M University in College Station, Texas and is a Health Disparities Research Fellow at the University of North Texas Health Science Center in Fort Worth, Texas. She also serves as the Managing Chief Equipping Officer (CEO) of the Total Temple Transformation (T3) Health & Wellness Ministry at Windsor Village United Methodist Church in Houston, Texas. Her research interests include health disparities research — cancer control, HIV/AIDS in the southern U.S. region and racial/ethnic diversity in clinical research participation.

“We are delighted to have Meisha as our keynote speaker,” said Clare Grace, PhD, Vice President, Site and Patient Access, INC Research. “Our goal for the ‘Inspiring Hope’ ideathon is to discover new ways to work together as an industry to raise awareness of clinical trials and encourage participation in clinical research.  I can think of no better person to inspire than Meisha. Her story is an inspiration to many and we look forward to hearing her share her own clinical research experience.”

“The ‘Inspiring Hope’ Ideathon is an exciting approach to gather innovative, new ways to improve clinical research literacy and to raise greater public awareness of clinical trials,” said Ken Getz, CISCRP’s Founder and Board Chair. “We are pleased to feature Jameisha’s story and hope it will inspire creative ideas and novel solutions that address patient and public engagement and education.”

Idea applications for the “Inspiring Hope” Ideathon are being accepted now through Aug. 8, 2016, and will be evaluated based on innovation, feasibility, sustainability and impact. Submitted applications will be shortlisted and finalists will be invited to the Ideathon event Sept. 27-28 in Boston, where they will collaborate live with a multifunctional team in a crowd-solving-type environment to further develop and ultimately present their solution to an expert judging panel. The 2016 “Inspiring Hope” Award winner will be named at the conclusion of the event and INC Research along with CISCRP will work together with the winning team to progress the chosen idea into a viable solution.

To learn more about participation in the “Inspiring Hope” Ideathon, please visit www.inspiring-hope-ideathon.com or follow us on social media at #ideas4patients.

About CISCRP
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 and the role each party plays in the 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 INC Research
INC Research (Nasdaq:INCR) is a leading global contract research organization (“CRO”) providing the full range of Phase I to Phase IV clinical development services for the biopharmaceutical and medical device industries. Leveraging the breadth of our service offerings and the depth of our therapeutic expertise across multiple patient populations, INC Research connects customers, clinical research sites and patients to accelerate the delivery of new medicines to market. The Company was named “Best Contract Research Organization” in December 2015 by an independent panel for Scrip Intelligence, and ranked “Top CRO to Work With” among large global CROs in the 2015 CenterWatch Global Investigative Site Relationship Survey.  INC Research is headquartered in Raleigh, NC, with operations across six continents and experience spanning more than 110 countries. For more information, please visit www.incresearch.comand connect with us on LinkedIn and Twitter @inc_research.

Collaborative Campaign between BlueCloud® by HealthCarePoint and CISCRP to Provide Funding to Raise Clinical Research Literacy for Students and their Families

BOSTON, MA – BlueCloud by HealthCarePoint announced today a campaign that will donate one dollar per clinical trial HCP connection made on its online networking platform to the Center for Information and Study on Clinical Research Participation (CISCRP), in support of education and outreach to students and their families about clinical research. The Research Literacy Connections for Tomorrow’s Cures campaign will launch on July 1st, 2016.

Dollars raised from this campaign will directly support the development of the CISCRP Traveling Museum Exhibit, which will engage elementary through high school age children and their families in 12 U.S. cities with interactive and experimental learning about the clinical research process and the role that clinical trials play in advancing public health. The Medical Heroes exhibit will present authentic stories and voices of clinical research volunteers. These encounters will give the exhibition authenticity, credibility, and emotional resonance as museum visitors connect with medical volunteers describing of the ups and downs and day-to-day aspects of clinical trials.
“All of us at HealthCarePoint along with our BlueCloud network members are very excited about our involvement with this important campaign” stated Al O. Pacino, president of HealthCarePoint. “Empowering our network members to become involved in promoting early awareness of clinical research is a catalyst to make a difference in the future of healthcare as an industry.”

“Clinical trial participants give a profound gift that makes new medicines and medical discoveries possible,” said CISCRP’s Founder and Board Chair Ken Getz. “But public knowledge about clinical research and public awareness and recognition of the gift of participation are very limited at this time. The new museum exhibit, with the help of BlueCloud’s donation, provides an unprecedented opportunity to reach and educate elementary through high school aged children and their families.”
As more healthcare professionals and sites become involved in BlueCloud, they have the opportunity to perpetually connect to governments, universities, sponsors, CROs, IRB’s and other industry stakeholders in order to participate in clinical trials, research collaborative programs and other healthcare initiatives. HealthCarePoint is donating 1 dollar per connection per year through its’ BlueCloud connection pledge. This pledge vehicle allows the industry to proactively fund important initiatives which are changing the face of healthcare including initiatives like CISCRP to raise research literacy for students and their families.

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 BlueCloud
BlueCloud® by HealthCarePoint is a universal networking technology that enables industry stakeholders to innovate and create new and efficient business models by connecting industry stakeholders in order to improve patient care, implementing standards and eliminating waste, fraud and abuse. Its’ network reaches more than 162 countries and is used by nearly 1,000,000 healthcare professionals, 45 Sponsors, 14 CROs, 8 IRBs, dozens of universities and thousands of healthcare and clinical research stakeholders and site organizations. Dozens of BlueCloud® applications work together as one, empowering all industry stakeholders to organize, centralize, connect, share and deliver information required for business and compliance by using a common, secure and private verifiable on demand system, saving the industry time, money and ultimately saving lives.

INC Research and CISCRP Launch “Inspiring Hope” Ideathon to Boost Community Involvement in Raising Awareness of Clinical Research

Initiative calls upon clinical trial advocates to collaborate on inspiring ways to increase patient participation

RALEIGH, N.C., May 20, 2016 (GLOBE NEWSWIRE) — INC Research Holdings, Inc. (Nasdaq:INCR), a leading, global Phase I to IV contract research organization, together with the Center for Information and Study on Clinical Research Participation (CISCRP), a non-profit organization dedicated to engaging the public and patients as partners in the clinical research process, have announced an innovative new initiative designed to promote greater awareness of the importance of clinical trial participation in advancing public health. The “Inspiring Hope” Ideathon, which kicks off June 1 and culminates with an event Sept. 27-28 at District Hall in Boston, provides a forum for stakeholders from across the clinical research environment to share and develop their ideas for effectively increasing the awareness of clinical trials among patients, healthcare professionals and the general public.

In a recent survey conducted by CISCRP, 81 percent of participants agreed with the importance of clinical research to discovery and development of new medicines, and 80 percent expressed they would be willing to participate in a research study. However, current data suggests less than 5 percent of the population ever participate in a clinical trial, with the greatest cause being lack of awareness.

“Clinical research is vital to the development of new drugs and treatments, but it is entirely dependent on patient participation,” said Clare Grace, Vice President, Site and Patient Access, INC Research. “The ‘Inspiring Hope’ Ideathon is the first initiative of its kind designed to generate new and unique ways to help raise awareness through a competition format. Together with CISCRP, our goal is to build a community of problem-solving advocates to present creative ideas that are feasible, sustainable and create a long-term impact in the broader clinical research community. We encourage industry thought leaders and clinical research advocates alike to contribute their visions for shifting the paradigm and improving healthcare quality and standards through clinical research.”

“There are numerous creative and innovative ideas that have been percolating among stakeholders throughout the clinical research enterprise to address the low level of public and patient awareness,” said Ken Getz, CISCRP Founder. “The Ideathon aims to tap into this rich pool of ideas and hopefully energize and mobilize this broad community of stakeholders to contribute to this important discussion. We’re looking for diverse teams to push their thinking, and to take really creative ideas to the next level. Ultimately, the best collective ideas will inspire new thinking, new approaches and new solutions.”

The “Inspiring Hope” Ideathon is modeled after crowd-solving events conducted in many other industries and amongst entrepreneurial groups. This unique style of event involves rapidly solving a problem with a large group of people in an innovative and competitive style. By bringing unique perspectives to the table from all different facets of the clinical research enterprise, INC Research and CISCRP aim to build a community of advocates committed to increasing ongoing participation in clinical trials, stimulating more active engagement within the broader community and better recognizing trial volunteers.

Idea applications will be accepted June 1 through Aug. 8, 2016, and will be evaluated on innovation, feasibility, sustainability and impact. Submitted applications will be shortlisted and finalists will be invited to the Ideathon event Sept. 27-28 in Boston where they will collaborate live with a multifunctional team in a crowd-solving-type environment to further develop and ultimately present their solution to an expert judging panel. The 2016 “Inspiring Hope” Award winner will be named at the conclusion of the event and INC Research along with CISCRP will work together with the winning team to progress the chosen idea into a viable solution. Mentors and/or sponsors are needed to support participants with idea development or a financial commitment to support travel and accommodation for patients and non-profit patient advocacy groups attending the event. The call for participation as a mentor or sponsor also opens June 1.

To learn more about participation in the “Inspiring Hope” Ideathon, please visit www.inspiring-hope-ideathon.com or follow us on social media at #ideas4patients.

About CISCRP
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 and the role each party plays in the 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 INC Research
INC Research (Nasdaq:INCR) is a leading global contract research organization (“CRO”) providing the full range of Phase I to Phase IV clinical development services for the biopharmaceutical and medical device industries. Leveraging the breadth of our service offerings and the depth of our therapeutic expertise across multiple patient populations, INC Research connects customers, clinical research sites and patients to accelerate the delivery of new medicines to market. The Company was named “Best Contract Research Organization” in December 2015 by an independent panel for Scrip Intelligence, and ranked “Top CRO to Work With” among large global CROs in the 2015 CenterWatch Global Investigative Site Relationship Survey.  INC Research is headquartered in Raleigh, NC, with operations across six continents and experience spanning more than 110 countries. For more information, please visit www.incresearch.com and connect with us on LinkedIn and Twitter @inc_research.

Press/Media Contacts:
Lori Dorer
Senior Director, Corporate Communications
INC Research
Phone: +1 (513) 763-1380
Email: Corporate.Communications@incresearch.com

Danielle Lavieri
Marketing and Communications Manager
Public and Patient Education Events
CISCRP
Phone: +1 (617) 725-2753
Email: daniellelavieri@ciscrp.org

INC Research and CISCRP Announce Strategic Collaboration to Focus on Patient Awareness

First-of-its-kind partnership underscores the importance of creating awareness of clinical trials and the vital role patients play in participating in clinical research

RALEIGH, N.C., April 06, 2016 (GLOBE NEWSWIRE) — INC Research Holdings, Inc. (Nasdaq:INCR), a leading, global Phase I to IV contract research organization, today announced a strategic collaboration with the Center for Information and Study on Clinical Research Participation (CISCRP), a non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. Through this collaboration, INC and CISCRP will jointly develop and implement educational initiatives designed to bring greater awareness to the importance of clinical trial participation in advancing public health.

“Continuing to make patients valued partners in the clinical research process is vital to accelerating the delivery of new medicines to market,” said Clare Grace, PhD, Vice President, Site and Patient Access. “CISCRP has been doing great work in this area for more than a decade and INC Research is proud to support their efforts to further increase awareness of the critical role patients play in clinical research and the value that this research brings to the development of new therapies. By furthering the connection that patients have with the clinical research community, we can better understand their perceptions about clinical research and the barriers that are potentially preventing them from participating in trials for which they may be suited.”

“Without clinical trial participants, new medicines and discoveries simply wouldn’t be possible,” said CISCRP Founder Ken Getz. “It is essential that we engage patients and their local health care community as partners in the drug development process. We are very excited about entering into this collaboration with INC Research to raise public awareness about clinical research, to educate the patient community and to ultimately strengthen patient engagement.”

As a main component of the strategic collaboration, INC Research and CISCRP will co-host a ground-breaking event in September 2016 called the “Inspiring Hope” Ideathon. This unique event will bring together industry leaders and pioneers along with advocacy groups and is designed to generate new ideas and discuss innovative ways to help raise awareness of clinical research. To register interest in participating or for more information on the event, please email InspiringHope@incresearch.com. In addition, INC Research will sponsor CISCRP programs and events, such as AWARE for All and Medical Heroes, throughout the year as well as collaborate on the development of future patient awareness events. The Company will work with CISCRP to leverage findings from the 2015 CISCRP Perceptions & Insights survey to improve awareness of volunteer perceptions, motivations and experiences with clinical research/inform strategies that incorporate the patient voice into trial design.

For the last two years, INC Research and CISCRP have co-chaired Patients as Partners in Clinical Trials, an annual conference designed for clinical trial executives in pharma and biotech, directors in patient advocacy, patients involved in clinical trials, academia, government and service providers who are looking to incorporate the patient perspective throughout the clinical trial process.

About CISCRP
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 and the role each party plays in the 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 INC Research
INC Research (Nasdaq:INCR) is a leading global contract research organization (“CRO”) providing the full range of Phase I to Phase IV clinical development services for the biopharmaceutical and medical device industries. Leveraging the breadth of our service offerings and the depth of our therapeutic expertise across multiple patient populations, INC Research connects customers, clinical research sites and patients to accelerate the delivery of new medicines to market. The Company was named “Best Contract Research Organization” in December 2015 by an independent panel for Scrip Intelligence, and ranked “Top CRO to Work With” among large global CROs in the 2015 CenterWatch Global Investigative Site Relationship Survey. INC Research is headquartered in Raleigh, NC, with operations across six continents and experience spanning more than 110 countries. For more information, please visit www.incresearch.com and connect with us on LinkedIn and Twitter @inc_research.

CISCRP Calls On US Regulators to Require Lay Language Trial Results Summaries for Patients

Boston, MA – June 21, 2015 – The Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit, is calling on U.S. regulators to address the unmet needs of patients involved in clinical research and improve transparency. With the support of hundreds of signatures from patients and professionals, CISCRP submitted a petition letter to the FDA urging the agency to help ensure study volunteers receive the results of their clinical trials directly, in lay non-technical language. CISCRP has also published a Letter to the Editor in the New England Journal of Medicine calling for trial results summaries to be provided for patients on ClinicalTrials.gov.

The Letter to the Editor, titled “Transparency and ClinicalTrials.gov Reporting: Have We Forgotten Patients?” was written by Zachary Hallinan and Kenneth Getz of CISCRP and Barbara Bierer of the Multi-Regional Clinical Trials Center at Harvard University. This letter responds to the March 2015 article, “Compliance with Results Reporting at ClinicalTrials.gov,” which addressed low compliance with ClinicalTrials.gov reporting requirements documented by Anderson et al.

The letter notes that “for nearly thirty years, researchers have been repeatedly documenting that clinical trial volunteers want and expect to be told what was learned as a result of their participation. Thanks to the efforts of European lawmakers, summaries of trial results will soon be available in everyday language to all EU citizens through a public registry, and it is clear that we must do no less for the millions of Americans who give the gift of their participation in clinical research.”

Hallinan, Getz, and Bierer urge readers to remember the importance of an equally-binding obligation to share research findings with the clinical trial participants who make advancements in medical research possible. The authors also point to evidence of the value of sharing results in understandable language and how this can be effectively put into practice.  For example, most participants (77%) are never told their trial’s results, and 72% say this is “very important” to address.(3) A new Institute of Medicine report calls sharing results in understandable language a “matter of public transparency and respect”, and cites CISCRP research demonstrating feasibility.(4)

Over the past five years, CISCRP has developed and tested a program to help address this unmet need. Working through an editorial panel of medical and health communications experts as well as patient advocates, CISCRP “translates” the technical results of clinical trials into scientifically accurate, non-promotional lay summaries written at a validated 6th-8th grade reading level. Globally conducted evaluations have shown that volunteers’ comprehension of the trial results improves dramatically after independent review of CISCRP lay-language summaries, and over 90% of volunteers indicate satisfaction with their level of understanding. The Communicating Trial Results program was recognized in 2013 with a Human Research Protection Best Practice award by the Health Improvement Institute.

 

About CISCRP

CISCRP is nonprofit organization that is dedicated to providing, educating, and informing the public, patients, medical/research communities, media, and policy makers about clinical research and the role each party plays in the process. For more information, visit https://www.ciscrp.org.

Media Contact

Maya Wise, Marketing and Communications Manager

617-725-2750

CISCRP to Bring AWARE Programs to NYC and Chicago

This fall, CISCRP will be hosting three AWARE for All events: its first ever program in New York City on Saturday, October 3 at St. John’s University in Queens, its third AWARE event in Chicago on September 28 at Loyola University Stritch School of  Medicine, and a fifth program in the Triangle, NC on October 22 at the William and Ida Friday Center. All programs will panel discussions and overview presentations to provide insight into the clinical research process—what it is, what it’s like to participate, what we learn from studies and why it’s important for many different people to get involved.

In addition to providing valuable educational information, the events provide food and free health screenings to attendees. At each AWARE event, CISCRP also recognizes and honors “Medical Heroes” – members of the community who have participated in clinical trials – in a special ceremony.

The AWARE programs aim to bring the research community, patients, and the public together to support dialogue and understanding about clinical research participation and the important role of study volunteers. AWARE events also put a face on the local clinical research community and raise awareness about clinical trials being conducted locally.

Jill McNair, CISCRP’s Director of Education, Outreach, and Community Support, describes AWARE events as a vital piece to the organization’s mission to engage the public and patients as partners in the clinical research process. “There is a need for general education about the clinical research process including the risks, benefits, and the rights of participants. Bringing the AWARE program to major cities like New York and Chicago helps spread these important messages about clinical research to a large and diverse community,” says McNair.

Registration for attendees is now open for the ChicagoNew York and Triangle events. Register online for free at www.awareforall.org.  Please contact CISCRP at 617-725-2750 if you would like to volunteer to help organize and support the AWARE programs.

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Synchrogenix and CISCRP Partner to Help Biopharm Companies Meet Clinical Data Transparency Requirements

PRINCETON, NJ – April 24, 2015 – Certara®, the global biosimulation technology-enabled drug development consultancy and the non-profit Center for Information and Study of Clinical Research Participation (CISCRP), today announced an exclusive partnership to provide lay language clinical trial results to clinical trial volunteers. Through this collaboration, Synchrogenix, Certara’s regulatory writing consultancy significantly increases global medical writing capabilities supporting an initiative that CISCRP pioneered four years ago.

On behalf of pharmaceutical, biotechnology and medical device companies, CISCRP and Synchrogenix will jointly provide clinical trial participants with high-quality, written summaries of their trial’s results, in alignment with Pharmaceutical Research and Manufacturers Association (PhRMA) and European Federation of Pharmaceutical Industries Association (EFPIA) transparency commitments and pending European Union requirements for layperson summaries. These summaries are brief, plain-language accounts of a clinical trial’s design, objectives, and findings.

“With increasing and impending regulation, sponsors are feeling the pressure to proactively address the demands of disclosure to the community,” said Kelley Kendle, Synchrogenix President and CEO. “This new partnership combines Synchrogenix’s technology-enabled operational expertise and clinical writing talents with CISCRP’s unbiased governance and dedication to engaging patients and the public in the spirit originally intended of the clinical research process.

Zach Hallinan, CISCRP’s Director of Patient Communication and Engagement Programs, added that “More than two dozen industry sponsors have begun implementing lay-language communication programs with CISCRP. By partnering with Synchrogenix, a market leading global provider of medical and regulatory writing services, we can dramatically expand our ability to meet sponsor requests while ensuring non-promotional and scientifically accurate communication through CISCRP’s proven process and independent, neutral nonprofit status.”

Communicating Trial Results to Study Volunteers – An Ethical Obligation
Studies consistently show that 90% of clinical trial volunteers expect to be told the overall results of their trial. Unfortunately, most never hear anything back from the Sponsor or research center after the last study visit, leaving many volunteers wondering if their participation mattered or was appreciated.

Over the past five years, CISCRP has developed and tested a program to help sponsors address this unmet need. Working through an editorial panel of medical and health communications experts as well as patient advocates, CISCRP “translates” the technical results of clinical trials into scientifically accurate, non-promotional lay summaries written at a validated 6th-8th grade reading level. User- and field-testing in the context of global trials shows that volunteers’ comprehension of the trial results improves dramatically after independent review of a lay-language summary, and over 90% of volunteers indicate satisfaction with their level of understanding. The program was recognized in 2013 with a Human Research Protection Best Practice award by the Health Improvement Institute.

Synchrogenix’s medical writers will develop the text and images for each lay summary, leveraging its artificial intelligence technology platform, and implementing the company’s quality control processes to ensure data and message accuracy. CISCRP will deliver a critical, unbiased review of the report, engage and interact with investigative sites and manage production, dissemination and communications of the report. Working together, the two organizations have developed a consistent, sustainable delivery model that will help to ensure that all the stakeholders in a clinical trial are fully informed.

 

About Synchrogenix
Synchrogenix, Powered by ClinGenuity and part of Certara, encompasses a group of separate entities operating together to provide regulatory writing services to the pharmaceutical, biotech, and medical device industries worldwide. Synchrogenix Information Strategies Inc.; Synchrogenix Europe, Ltd.; and Synchrogenix Philippines, Inc. (SPI) are all wholly owned subsidiaries with an overall governance structure that creates and enforces a global standard of service, technology, and quality.

About Certara
Certara™ is a global biosimulation technology-enabled drug development and safety consulting company. Its customers include hundreds of biopharmaceutical companies around the globe, together with several regulatory agencies. Certara’s solutions, which span the discovery, preclinical and clinical stages of drug development, enable data-driven decisions, leading to more precisely designed clinical trials with a reduced risk of failure and improved subject safety. For more information, visit www.certara.com.

Certara Contact:
Ellen Leinfuss, 609-216-9586
Chief Marketing Officer

CISCRP Media Contact:
Maya Wise, 617-725-2750
Marketing and Communications Manager

Professionals Gather to Discuss Public Perceptions of Clinical Trials

The second Public & Patient Perceptions and Insights Roundtable on May 21st brought together more than thirty clinical research professionals in Princeton, NJ to review the results and implications of CISCRP’s recent global study. Discussions at the interactive forum focused on the improvement of public and patient perceptions and attitudes about clinical research.

“We shouldn’t rest on these laurels,” said CISCRP Founder and Board Chair Ken Getz. “With this growing public trust there’s a higher expectation that we need to meet in order to engage study volunteers.” inVentiv Health’s Jim Kremidas presented the application of CISCRP’s study results and proposed three ways to best influence positive patient experience in clinical research: “Ensure protocol feasibility, pick the right sites, and really understand the motivation of your patients.”

With these meetings, CISCRP and program sponsor inVentiv Health hope to increase understanding of public and patient perceptions within clinical research and apply this knowledge towards improving the study volunteer experience.

View CISCRP’s published reports and contact us for more information about the Perceptions and Insights series, or about hosting a seminar.

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