The findings of a thirty-year long clinical trial involving more than 400 people were nearly lost forever until Sue Richards and Julie Burrett took a unique avenue to make the results public. In 1974, the Medical Research Council (MRC) in the UK funded a trial for people with polycythaemia – a condition where people have a high number of red blood cells. The researchers wanted to determine the long-term effects of three possible treatments. The condition has a low mortality rate, so recruitment ran until 1993 and the patients were followed up with until 2003.
The trial suffered a number of setbacks. Recruitment was very slow and one of the coordinators of the trial passed away during the study. The MRC also moved its administrative centre from London to Oxford during the trial and some records were lost. After the move, Sue Richards, the statistician in Oxford, reran the analyses and wrote an initial draft of the paper. Unfortunately, the lead researcher retired before the paper was completed and the computer system used to analyse the data had become obsolete. By this point, funding for the trial had run out and there were no resources left to finish the paper.
In 2012, Sue Richards was planning on retiring and knew it was the last chance to get the data published or it would be lost forever. However, no journal would publish the partially-completed paper. Richards and Julie Burrett, the data manager on the trial, were finally able to share the results of the trial by attaching it to a commentary on publication bias for the journal Trials.
By making the results of this trial public, Richards and Burrett made the contributions of another 408 people in a clinical trial count. Read other stories of researchers publishing their old data in our recovered trials series.
Sue M Richards and Julie A Burrett: A proposal for reducing the effect of one of many causes of publication bias. Trials 2013, 14:41. Full text