Dear reader, This first edition of the Health-RI Newsletter is dedicated to the Dutch COVID-19 Data Support Programme. This initiative was launched in response to the current outbreak of coronavirus disease (COVID-19). Please share this newsletter in your professional network. Stay safe and healthy. The Health-RI team |
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Health-RI facilitating COVID-19 research
Health-RI launched the Dutch COVID-19 Data Support Programme. To support investigators and health care professionals with tools and services in their search for ways to overcome the pandemic and its health consequences.
Local research actions are taking place across the world. Health-RI is facilitating COVID-19 investigators by connecting communities, providing data services and tools and presenting an overview of COVID-19 related initiatives.
For a full overview of this Health-RI initiative, visit the webpage.
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Call for COVID-19 data initiatives
Health-RI is gathering an overview of national and international COVID-19 related data infrastructure initiatives to support the research community, promote collaboration and prevent fragmentation of research efforts. This in alignment with RIVM, VWS, SURF, NFU and all the UMC’s,
You can help us to get a comprehensive overview.
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COVID-19 collections in BBMRI.nl Catalogue
Data, biobanks or sample collections related to COVID-19 will be made available on our website through BBMRI.nl Catalogue. Existing COVID-19 relevant collections have been indexed to make them easy to identify. All researchers and biobanks are invited and encouraged to make new COVID-19 data collections findable through the BBMRI.nl Catalogue. |
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Support with Ethical, Legal and Social Implications (ELSI)
Together with the ELSI Servicedesk and several partners, Health-RI is working on urgent needs that have arisen in the context of COVID-19. For example: how do we organize patients’ consent or objection in a fast, legally and ethically sound way when collecting data or samples for COVID-19 research. Furthermore, guidelines and formats for the access and use of collected data and samples are being developed.
Many answers on ELSI related questions can already be found on the website of the ELSI Servicedesk . When new guidelines or procedures become available, these will be made available there. We want to be sure to address the right needs. So, please send an email with your questions, experiences, hurdles and issues to: [email protected] (please include “ELSI” in the subject line). |
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Corona Questionnaires available from Lifelines
The Lifelines biobank has started a study on the risk factors and spread of the Corona virus. The Lifelines and Lifelines NEXT coronavirus study sends out weekly questionnaires to participants. The questions pertain to COVID-19 related symptoms, comorbidity and psychosocial wellbeing.
Lifelines invites researchers to also use the Lifelines questionnaire as this might help to harmonise efforts and ease meta-analyses in the near future. Many biobanks have already shown interest in the questionnaire. If you would like to use the Lifelines questionnaire, please contact the programme manager of the Lifelines Corona Research project: Jackie Dekens. |
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Important: Before you start a clinical research project on COVID-19
When starting a clinical research project on COVID-19, please make sure to check the Health-RI website for projects and initiatives you could collaborate with. These are listed on the Health-RI overview of COVID related initiatives and the Catalogue pages. The website also lists clinical research data tools that will help you make your data interoperable and allow you to combine your results with COVID-19 related data generated by other researchers. Some recent examples:
COVID-19 – Interoperable Case Record Forms
If you want to collect clinical data, the WHO case record forms should be used. The March 23rd 2020 NOVEL CORONAVIRUS (COVID-19) - RAPID VERSION can be downloaded here. Castor has made these forms available in xml format, ready to use in any research data capture system of your choice. If needed, the iCRF generator can be used for conversion.
Data created with these Case Record Forms will be made interoperable in the future. An initiative from VODAN, together with GO-FAIR, AmsterdamUMC (CovidPredict: central national patient database), RadboudUMC and a Health-RI team, are working on a semantic data model and code book to make that possible. They are also expanding the Case Record forms with specific parameters for a.o. radiology related data (e.g. CORAD scores). The latest version of this model can be found in BioPortal or Github.
Another initiative to make COVID-data interoperable
The European Health Data and Evidence Network EHDEN has launched a COVID-19 Rapid Collaboration Call to map COVID data to the OHDSI OMOP Common Data Model. Initial work can be found at github OHDSI COVID landing page.
If you have any questions, please don not hesitate to ask Health-RI. |
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Subscribe to Health-RI COVID-19 updates
To stay informed on the Dutch COVID-19 data support programme, just add your name to the Health-RI mailing list.
For updates and news also follow Health-RI on LinkedIn. |
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