In 2018, IAPMD joined  Me v PMDD and Vicious Cycle in conducting  a large global survey to gather quantitative information about the real impact of PMDD. This survey was marketed as the ‘Help Us Help You’ survey and is now referred to as the Global Survey of PMDs 2018 (GSPMD). We received more than 3000 responses, making it the largest known data collection in history involving those with PMDD.

Progress Update

The response to the Global Survey of PMDs 2018 was massive, and this meant there is a huge amount of data and variables to prepare, analyze, and publish, using 100% volunteer labor. Members of our Clinical Advisory Board (CAB) and their research volunteers are working hard to prepare and analyze the data for scientific publication. We decided to start the release of findings by writing a paper on a very high-impact topic: suicide. We are currently putting the finishing touches on a scientific paper highlighting how common suicidal thoughts and behaviors are among those with PMDD. Once that paper has been submitted for peer review, we will begin on another paper focused on the experiences of those with PMDD at various treatment providers (gynecologist, psychiatrist, GP, etc). We will be comparing experiences with diagnosis and treatment across these different providers to better understand where our education and awareness efforts are most important. 

Why is it important to publish these findings in a scientific journal? Why can’t we just send the numbers to the press, or publish them on our website? 

We believe it is in the best interest of the PMDD community to take the time to submit the results of the Global Survey of PMDs 2018 to scientific journals for publication where they will be validated through a rigorous peer review process. The benefits of this process are many, and include: (1) validation from the scientific community that the research and the findings are trustworthy and accurate, (2) improvements in our analysis by allowing other experts in the field to review our work, and (3) increased likelihood for high-profile news media organizations and journalists to publish the results of our study. Media outlets such as the BBC, New York Times, CNN, NPR, and Fox News will not publish research findings that have not been peer reviewed and published in a scientific journal. 

Ultimately, we believe the results of our global study deserve the impact that only scientific publication can provide. We plan to shout the findings from the rooftops and to every major news media outlet as soon as they are published. 

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