Since 2003, the Center for Information and Study on Clinical Research Participation (CISCRP) has developed a variety of award winning programs, resources, and events to educate and inform patients, members of the public and professionals on clinical research participation.
Most of these resources are available at no cost to patients, their families, friends and the public. For some services and events, CISCRP relies on donations from government agencies, foundations and industry to support our mission as a nonprofit. Click here to view event sponsorship opportunities.
Launched in 2004, AWARE for All is a live “Clinical Research Education Day” event that has reached more than a dozen major cities including Baltimore, Boston, Chicago, Dallas, Houston, Indianapolis, Los Angeles, Philadelphia, and San Francisco. The AWARE for All program is designed to put a face on the professionals who conduct clinical research locally and educate the public about the clinical trial process and local research activity. Featuring prominent area physicians, health officials and medical experts, AWARE provides free health screenings, refreshments, and information for attendees. Patient speakers provide much-needed insight into their experience with clinical trials and illness. On average nearly 300 people attend each live AWARE event with more than a third from minority communities. Since its launch, the AWARE program has reached more than 429,000 households.
Communicating Trial Results
Since 2011, CISCRP has worked with research sponsors to address a critical unmet need in the research enterprise: studies consistently show that most clinical trial participants (90%) want to know what the research community learned from their participation, yet 80% never hear from the sponsor or research site staff at all after a clinical trial has concluded. Working through our 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.
Prepared in printed, electronic and audio formats, the summaries can be disseminated to volunteers via their investigative site as a way to fulfill researchers’ ethical obligation to return trial results, and demonstrate to volunteers that they are respected as true partners in the clinical research process.
CISCRP’s library of educational brochures, posters, videos, and books cover a wide range of topics for research participants, in culturally sensitive 6th to 8th grade reading level and are translated into two-dozen languages. Since 2004, sites, sponsors and CROs have distributed nearly 1 million copies.
Our educational brochures provide easy-to-follow information on a variety of topics important to study volunteers and their support network. Brochures are available in more than 26 languages with references to country-specific resources.
CISCRP produces two internationally recognized poster series designed to raise public and patient awareness of clinical research and appreciation for study volunteers and the gift of their participation. These tools were developed in collaboration with the Department of Health and Human Services, and with input from NIH, FDA, AAHRPP, PhRMA and other stakeholders.
Developed in partnership with Public Health TV, and medical & health centers, CISCRP’s educational videos present real-life experiences of clinical research participants. Among these videos are titles specifically created to reach underserved population using language specific and culturally appropriate messages to describe the clinical research process.
The Gift of Participation is an award winning book written by Ken Getz, CISCRP’s founder and board chairman. The Gift provides an in-depth guide for volunteers to navigate all aspects of the clinical participation process and provides a wealth of reference resources.
Medical Heroes is CISCRP’s groundbreaking public service campaign aimed at transforming public perception of the clinical trial participant from “guinea pig” to “medical hero.” The television, radio and print formats of the campaign depict research volunteers in typical, everyday settings, and highlight the profound gift of their participation.
Developed with input from a large number of stakeholders (including NIH, FDA, PhRMA & AAHRPP), CISCRP’s Medical Heroes public service campaign has been broadcast widely since its introduction.
CISCRP is developing a traveling exhibit for Science/ Children’s Museums that builds on the Medical Heroes concept. The exhibition aims to demystify clinical research, to show what clinical research is all about through the eyes of study volunteers and to celebrate the profound contribution that volunteers make to advance public health. The exhibit will include interactive elements and will feature local-area clinical research professionals and facilities.
Research and Studies
CISCRP has an extensive ten year history conducting research among study volunteers to understand participant perceptions, motivations and experiences with clinical research. To support these custom research projects, CISCRP gathers secondary data, develops and implements surveys, and conducts interviews and focus groups.
Search Clinical Trials
Each year, CISCRP staff conducts more than 4,000 searches on behalf of patients and their families seeking relevant clinical trials in their geographic area. Typically, individuals contact CISCRP because they need real-time assistance in searching the Internet to locate clinical trials and specific professionals to contact. CISCRP staff performs custom searches and emails or mails the results directly to patient and their families.
Each year, CISCRP is contacted to provide local area experts on clinical research to speak at community events, academic and health centers, high school and college science programs and at medical schools. CISCRP’s speakers have been certified as topic experts and include clinical research scientists, operating managers, investigative site staff and clinical research volunteers.