To us at CFUnite, it seems obvious that the results of clinical trials should be freely accessible to the public. After all, it is patients who participate in the clinical trials in the first place, they deserve to know the outcome.
So many would be astounded (and horrified) to find out that not all results of clinical trials enter the public domain. Some are kept secret, causing difficulties when doctors and patients have to decide whether or not to prescribe a medication. We know that this goes on in all areas of research, and we’d be naïve to think that research in CF is an exception.
Why is this important? Well imagine if there are two trials of the same medication. One trial has published its results, and it looks like the medication works. A second trial however has found that the medication did not work, but was never published. If we have both results it is possible to analyse the results of the two conflicting trials together, and then make a judgement as to whether the medication does in-fact work. But if we dont have all the results, we can never do that. Because we don’t have all the results, we may end up making the wrong choice.
Alltrials.net is a campaign to get the results of all clinical trials published. We wholeheartedly support their campaign, and urge you to sign their petition.
At CFUnite we want to go further – CF research should be a collaboration, with people with CF and researchers working together to design trials studying outcomes which mean something in the lives of people with CF. That’s why you can sign up to be involved in providing your opinions of the design of trials at an early stage.
We also think it’s important that the results of trials are accessible to everyone which is why you can find summaries of recently published studies here.
It’s early days for us, but knowing the results of all the clinical trials which have been done would be a step in the right direction.