How and when do I get the study results ?
Clinical trial reports should be produced for every trial, and ideally published. Best practice is to report within 12 months of completing the last participant visit in a trial. To date, those running trials have not always been very good at publishing reports, but there is mounting regulatory, funding and societal pressure to make sure all trials are reported.
The tricky bit is making sure the reports find their way to the participants of a trial, which is even more challenging. Sites don’t necessarily remember or have the resources to find out where participants may now be, months or year after a trial ends. Sometimes, they don’t get the reports themselves.
Unfortunately, sadly, sometime the first a participant will hear about the results of the trial is in a media story or press release initiated by those that ran the trial. This is less than acceptable. Companies and researchers are continuing to look for better ways to provide results to study participants, but it is a work in progress. It is in fact one of the service we hope Research4Me will provide to those running trials.
Expect that you should get the results about a year after the end of the trial. If you are not sure when the trial will end, ask the trial team as they should be able to tell you when they expect the last participant visit will be. It’s not an ideal system, but if you really want to make sure you get the results, put a reminder in your diary to chase the trial team a year after the expected end of the trial to see if they have received the trial results, and continue to follow up with them 6monthly until you get them.