Millions of study volunteers give the gift of their participation in clinical research each year. These patients help researchers answer important medical questions that could benefit public health.
Participants in clinical trials can spend weeks, months, or even years making regular visits to a research site, keeping a log of their symptoms and treatment reactions, and getting checked and examined.
CISCRP’s research has shown that, when a clinical trial is over, more than 90% of volunteers would like to know the results of their study, and many wonder:
What was learned from my participation? Did my participation lead to knowledge that will help others dealing with an illness or medical condition?
CISCRP believes research volunteers should know the results of their trial, and wants to make it easier for participants to find out what researchers learned from clinical trials.
Below is a list of sources where the results of a clinical trial may be found:
- The U.S. National Institute of Health (NIH) requires that many clinical trial results be posted on the website www.clinicaltrials.gov. To find results and other information about a specific trial, the NCT# of that trial will be most helpful. Study staff will be able to provide this information, and it can also be found on the informed consent form.
- CenterWatch, keeps the New Medical Therapies™ database offering a concise overview of investigational therapies for a specific disease or condition. To search the NMT™ results, select a therapeutic area.
- For studies involving a cancer treatment, visit the National Cancer Institute (NCI) Cancer Clinical Trials Results. It contains summaries of recently released results from cancer clinical trials.
- Some study sponsors now have a database on their website that contains the technical clinical trial results for their studies. Speak with the staff at your trial site about whether your study has a database
Keep in mind that most clinical trials take a long time to complete – sometimes years. This is because a trial often has many study sites. So even if your participation in the clinical trial has ended, the study may still be ongoing.
CISCRP’s Communicating Trial Results Program
Since 2011, CISCRP has worked with clinical trial sponsors to provide participants in the certain studies with the results of the research.
After a study ends, researchers must compile results and write a report. The clinical trial results are typically ready one year after the end of the trial.
However, it is not always easy to know how to find the results. Also sometimes the trial results are written in technical language that is hard to understand.
To help solve these issues, CISCRP has developed and tested a program for returning results to study volunteers with an easy to understand summary of the trial results. Over two dozen study sponsors have collaborated with CISCRP to create these Trial Results Summaries.
Because some trials take place in locations across the country and around the world, it may take many months or several years for the study to finish. This means that a study may continue for years after a volunteer has completed their participation in the trial.
CISCRP’s program provides an opportunity for the study staff to stay in contact with study volunteers while they wait for the results to be ready with non-promotional, educational communications that shows appreciation for the gift of their participation and values the volunteers as true partners in medical research.
It is our hope that, eventually, study sponsors will regularly return the results of all clinical trials to study participants in a way that is understandable for the patients, their families, and their caretakers.
Click here to view some of the Trial Results Summaries that CISCRP has created. The study sponsors have reviewed the summaries to make sure they are scientifically accurate.
Click here to read about CISCRP’s Communicating Trial Results Program in our recently published article in the journal Research Practitioner.