Studies consistently show that most clinical trial participants want to know what the research communities learned from their participation, yet most never hear from the sponsor or research site staff at all after a clinical trial has concluded. A growing number of pharmaceutical, biotechnology, and medical device companies have recognized this situation and are closing the loop with their study volunteers by providing clinical trial results summaries, also known as lay language or plain language summaries.
What Are Lay Language Summaries?
The summaries are prepared in printed, electronic and audio formats to accommodate different learning styles; the lay language summaries are 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’re respected as true partners in the clinical research process. Most lay language summaries include:
• Thank you Message to Volunteers
• What is Happening with the Trial Now?
• Why Was the Research Needed?
• What Treatments Did the Patients Take?
• What Happened During the Trial?
• What Were the Results of the Trial?
• What Medical Problems Did the Patients Have?
• How has this Trial Helped Patients and Researchers?
• Where Can I Learn More?
Join An Editorial Panel
CISCRP’s Communicating Trial Results program provides study volunteers with the results of their clinical trial. To develop the summaries, CISCRP callS upon medical professionals, patient advocates, and patients to form editorial panels that review all of the lay language summaries and communications before they are sent to study volunteers.
CISCRP is actively seeking volunteers to serve on these panels!
Editorial panelists review summaries and lay communications that match their area of expertise or interest to help us deliver easy-to-understand, yet scientifically accurate summaries to study participants around the world. Participants:
• Highlight areas that may be confusing to study participants
• Identify areas that may come across as biased
• Classify sections that seem to be withholding vital information
Qualifications of editorial panel participants
• A general member of the public with no health or research background
• Patient or patient advocate with a disease or condition
• Healthcare professional who does not currently work in the clinical trial enterprise
Contact CISCRP if you are interested in joining an editorial panel.