In 2013, the Center for Information and Study on Clinical Research Participation conducted a global study on public and patient perceptions of clinical research. The aim of this study was to resume and establish routine global assessment of perceptions, motivations, and experiences with clinical research participation. The insights found in the 5 reports below help to monitor trends and identify opportunities to better inform and engage the public and patients as stakeholders and partners in the clinical research enterprise.
Each of the 5 downloadable reports below were produced based on an online international survey CISCRP conducted between January and March 2013. The survey instrument was based in part on questions posed in past surveys. CISCRP received input and support from pharmaceutical, biotechnology, and contract research organizations, and from investigative sites. The survey instrument was also reviewed by an ethical review committee. A total of 5,701 respondents completed the survey.
We provide copies of these reports free-of-charge to all of CISCRP’s audience, but ask that research professionals consider donating to our nonprofit organization in support of our ongoing efforts to research and understand study volunteer perceptions, experiences and behavior.
CISCRP is now presenting the findings of this important research at conferences, meetings and forums across the country. Find out more about CISCRP’s Perceptions & Insights Seminar Series here.
2013 CISCRP Perceptions & Insights Study: The Informed Consent ProcessPast research has exposed many shortcomings in the informed consent process. Topics covered in this report: study volunteer experiences with informed consent form review, difficulty in understanding the inform consent form, expectations and impact of the review process by gender and region.
2013 CISCRP Perceptions and Insights Study: Ineligible Participants and Those Who Terminate Participation EarlyVery little is known about patients who are ineligible to participate and about study volunteers who terminate their participation early and unexpectedly. Topics covered in this report: understanding of ineligibility and subsequent steps taken by prospective volunteers, and a much closer look at characteristics and experiences of patients who dropped out prematurely by gender and region.
2013 CISCRP Perceptions and Insights Study: Study Participant ExperiencesThe clinical research enterprise is actively looking for opportunities to improve study volunteer experiences. Topics covered in this report: study volunteer motivations, expectations and anxieties, relationships with study staff, and willingness to participate again by gender, age and region.
Clinical Trial Information SeekersThe past seven years have seen a proliferation of print and online information about clinical research activity and results. Topics covered in this report: information seeking behaviors, resources used to find information, and usage of social and digital media by gender, age and region.
General PerceptionsStakeholders in the clinical research enterprise have stepped up efforts to put patients at the center of clinical research planning and execution. Topics covered in this report: patient understanding of clinical research concepts, perceptions of participation risks and benefits, and willingness to participate by gender, age and region.