CISCRP - Center for Information & Study on Clinical Research Participation Healthcare Professional
about clinical research participation
Provide Education to Staff and Patient Volunteers
stay informed and involved in clinical research
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Do patients trust your company to report trial results?

More than anything else, study volunteers want to know that their participation mattered. Regardless of the outcome, people who participated in clinical research want assurance that something was learned from their contribution that will inform medical knowledge about disease and how to treat it.

Unfortunately only 14% of study volunteers believe that drug companies will eventually disseminate all information—positive or negative—about an investigational treatment. Once a clinical trial has ended, 86% of study volunteers say that they never learn about their clinical trial results. Very few participants hear from study staff (e.g. the principal investigator and study coordinator) – or any party – once their participation has ended.

How CISCRP Helps Research Sponsors Communicate Trial Results to Study Volunteers

The non-profit CISCRP has developed an accessible, non-promotional program by which research sponsors can communicate trial results to volunteers and rebuild public trust. This includes the following services:

  • CISCRP oversees a panel of consumer science and medical writers to translate the technical
    clinical trial results you post on clinicaltrials.gov into easy-to-understand lay language at a
    validated 6th to 8th grade reading level.

  • CISCRP produces three versions of the lay summaries in print, webpage and audio formats
    to accommodate different learning styles.

  • CISCRP trains your investigative site staff in anticipation of follow-up questions from the
    volunteers.

  • CISCRP integrates this process with your current systems and rolls it out across your portfolio.

  • To address the issue that patients have trouble remembering their trial when so much time
    passes between volunteering and the posting of the trial results, CISCRP provides a series
    of trial-related educational communications starting at the patient’s last visit and then at 3 or
    6-month intervals until study results are ready for distribution.

For more information about the Communicating Trial Results program, please call CISCRP at 617-725-2750 or email us.