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It is probably a trifle cliched to start with commenting on how much our world has changed since the last EHDEN newsletter, but it has.
Many of us from the EHDEN project emerged from meeting rooms in Barcelona having concluded a second study-a-thon at the end of January on Rheumatoid Arthritis not realising within weeks that we would not be able to travel and interact in the same way. This remains the case now, and likely for the remainder of the year, at least beyond individual or very small groups.
We are all dealing with the considerable uncertainty that means it is difficult to plan beyond only weeks, and within the project we have been working hard to ensure that we can maintain progress in this context. Moreover, we decided that we had to respond to the SARS-COV2 pandemic, and COVID-19.
This was in part to an ethical reaction in wanting to improve the current situation of many unanswered questions and too little available and relevant data, and also in response to the OHDSI COVID-19 virtual study-a-thon held on 26-29 March. Over 330 participants, from 30 countries participated in an intense period of undertaking characterisation, effect estimation and prediction studies supported by considerable literature review. EHDEN partners have played a leading role in organising this study-a-thon.
Publications are following, on the real world adverse event profile with hydroxychloroquine, evaluating the profile of COVID-19 patients versus last influenza season, and predicting the patients at most risk and need for critical care. All of this has contributed to the understanding of the pandemic, but questions remain of course, and the amount of relevant and representative data was limited. As it was pre-pandemic, and will be post-pandemic.
Hence, EHDEN announced a rapid COVID-19 collaboration through April and May, culminating in 75 applications from 20 countries, from which we selected 25, from 10 countries, including approximately 63 million records, of which 1 million were tested for SARS-COV2 and 228,000 had a positive diagnosis. To expedite the mapping of all of this data in collaboration with our Data Partners, we created an ETL Taskforce of specific EHDEN Partners, and some of our certified SMEs, who have volunteered to work pro bono. We are earnestly looking forward over the coming months to the expansion of the EHDEN network with these newly mapped data sources. The intense collaboration with the Data Partner is very exciting and will further improve our procedures.
Meanwhile, we have had a second SME call in February, and the 16 selected SMEs are working through the ETL Learning Pathway on the EHDEN Academy and we look forward to them joining our first eleven from 2019 after July and to working with all with our existing Data Partners from last year, and the next Open Call likely after the summer. We will also be further developing the nascent SME community and marketplace.
We have spent time to re-evaluate progress and our planning for the second half of 2020, and are committed to maintaining our work plan and deliverables as best we can within the constraints of the pandemic.
EHDEN has been maintaining communications through our usual channels, but we also look forward to reinitiating our webinar programme in due course, and may explore podcasts too, so watch this space.
Lastly, and most importantly, we wish to thank everyone in the project for continuing to apply themselves to our collective goals, ensuring continuous progress for EHDEN. We also wish to recognise all those who have been bravely caring for COVID-19 patients internationally, and our condolences to all those who have lost a loved one or friend.
We hope in the next newsletter we will be able to talk about the pandemic in the past tense, and to more positive times. Keep well.
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