Issue 3 - July 2020
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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.
Peter Rijnbeek
Nigel Hughes

Upcoming open call for data partners

We anticipate running the next open call for Data Partners through September 2020. More information on this next open call will become available in August.

The EHDEN Academy has launched!

On April 23rd, 2020, EHDEN launched the EHDEN Academy in Europe as an online educational resource for anyone working in the domain of real-world data use, and real-world evidence generation, with the aim of becoming a primary educational resource in the field.
Read More - Launch of the EHDEN Academy

COVID-19 Study-A-Thon

March 26-29, the Observational Health Data Sciences and Informatics (OHDSI) community, supported by EHDEN partners, hosted a COVID-19 virtual study-a-thon to inform healthcare decision-making in response to the current global pandemic. More than 330 researchers, from 30 different countries, fast-tracked research using healthcare data to inform healthcare decision-making.

Five preprints have already been published as a result of this COVID-19 Study-a-thon, directly impacting patient care, and more will follow:
Read the whole story on our COVID-19 Study-a-thon page

EHDEN & OHDSI Studyathon on Rheumatoid Arthritis

Between January 13 and 17, approximately 40 people of all disciplines, from clinical to academic to Data Partners (all with data mapped to the OMOP common data model) gathered in Barcelona for the second EHDEN study-a-thon. This time, research questions were situated in the domain of Rheumatoid Arthritis as we set out to evaluate the drug utilisation of Disease Modifying Anti Rheumatic Drugs (DMARDs), their safety profiles and outcomes, as well as prediction modelling.
Read More

Outcome of our COVID-19 Rapid Collaboration Call

From 16 April – 14 May, EHDEN announced a rolling COVID-19 Rapid Collaboration Call. Its goal is to help clinicians, scientists, governments and the public to know more about characterising patients with COVID-19, how best to manage their care, and if certain treatments are safe and effective.

Upon conclusion of the Call:

  • 75 applications were submitted from twenty countries across Europe
  • 25 Data Partners have been accepted from ten countries
  • Includes data from 1 million SARS-COV-2-tested patients; 228,000 of whom tested positive.
COVID-19 Rapid Collaboration Call Chronicle - Part 1
COVID-19 Rapid Collaboration Call Chronicle - Part 2

The 2nd open call for SMEs

Between the 1st and 29th of February, EHDEN ran its second open call for SMEs to apply for training and certification to convert health data from various formats to the OMOP common data model.
Our independent review committee selected 15 SMEs out of 35 applications. These SMEs have now finished their training and will take the certification exam over summer. Together with the 11 certified SMEs from our first open call for SMEs, this will result in 26 EHDEN Certified SMEs.

Meet the EHDEN partners

In this edition of ‘Meet the EHDEN partners’ we wanted to highlight the public-private partnership aspect of IMI projects and therefore interviewed both an academic partner as well as an EFPIA partner. Click the 'Read more' button below to find out what they would consider a success for EHDEN.
Gözde Susuzlu Briggs
Project Coordinator
European Patients Forum
Read More
David van Brunt
Senior Research Fellow and Head,
Division of Evidence and Analytics
Read More

Outreach and Sustainability – what’s it all about?

When we started EHDEN we were intent on ensuring we met our goals and deliverables as per plan, and importantly set a solid foundation for our collective work. The overview of our progress during 2019, the foundational year for EHDEN, can be found in the summary report we've prepared.
Read the EHDEN Year 1 report

Outreach and Sustainability – what’s it all about?

EHDEN has a dedicated work package (WP) focusing on the outreach and the sustainability of the project as it is today, and beyond the 5-year timeframe of the project. In this article, our WP6 Leads Johann Proeve and Carlos Diaz zoom in on the work done so far in these two important workstreams.
Outreach & Sustainability


OHDSI Corner

EHDEN and OHDSI collaborate on many fronts on a daily basis. Here we highlight a few of the recent important OHDSI achievements and events:

2020 OHDSI Symposium (Virtual, Oct. 18-21) OHDSI Presents Findings At 2020 EULAR E-Congress Miscellaneous

Upcoming events

2020 OHDSI Symposium
18-21 October 2020

Thank you to all those who have read prior newsletters, but we propose this content to be transitioned to other channels and hence this is the last newsletter in this format. We look forward to continuing to communicate on the project’s progress.
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Copyright © EHDEN, All rights reserved.

This newsletter reflects the views of the EHDEN consortium and neither IMI nor the European Union and EFPIA are liable for any use that may be made of the information contained herein.

The European Health Data & Evidence Network has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 806968. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.
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