BBMRI.nl Supporting COVID-19 research
In response to the outbreak of coronavirus disease (COVID-19) local research actions are taking place across the world. BBMRI.nl is a main contributor to the Dutch COVID-19 Data Support Programme launched by Health-RI. Much effort has been put into indexing COVID-19 collections in the BBMRI.nl Catalogue.
Organisations with COVID-19 relevant collections in the BBMRI.nl Catalogue can now be marked with a ‘COVID-19’ filter. This will make it easy for researchers to identify COVID-19 relevant collections, ongoing research, and collaboration possibilities.
Check the BBMRI.nl Catalogue
To stay informed on the Dutch COVID-19 data support programme, please add your name to the Health-RI mailing list.
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ErasmusMC Human Genome Facility offers free Genotyping of COVID-19 cases Free of charge genotyping of hospitalized proven covid-19 cases and participating Genotyping of COVID-19 patient DNA.
The genetics community is putting much effort to help understand host genetics in relation to COVID-19. You can play an important role by genotyping your samples and contributing your data to a large analysis. The Human Genome Facility of ErasmusMC offers free of charge genotyping of proven COVID-19 cases and discounted genotyping of COVID-19 related cases. The data of those samples will be returned to you for use in your own and in large-scale-scientific research.
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Biobanken.nl on Rare Disease Day 2020 On the rarest day of the year, the 29th of February, the VSOP – the Dutch Patient Alliance for Rare and Genetic Diseases organized a festival. The festival was visited by more than 100 patients with a rare disease, their loved ones and patient representatives. The website Biobanken.nl was promoted to all attendees with a flyer on display at the stand and a banner.
Read our news item about the showcasing of biobanken.nl on the National Rare Disease Day here.
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Dutch hospitals work on Central national COVID-19 patient database Doctors and researchers from Amsterdam UMC and Maastricht UMC+ started a consortium to centralize the collection of data from COVID-19 patients that have already been admitted to Dutch hospitals. The project named CovidPredict will help in predicting the course of COVID-19 patients and to optimise their treatment.
Special feature of this study is that the study does not take precious time from physicians directly involved in the care for COVID-19 patients. Data is collected from electronic case records.
The consortium has grown rapidly since the start of the project, with now nine hospitals, and numerous clinicians, and researchers joining the team every week. The available data has grown rapidly.
All data are pseudonimysed (i.e., not reducible to the patient) stored in a secured CastorEDC database and based on the official CRF from the World Health Organization (WHO).
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Would you like to make maximal use of your data? What if all health and health care organizations across the Netherlands could share their data, safely, securely and efficiently? That would be a significant boost for Dutch health research and health care. However, it has proven to be a challenge and various organizations experience similar difficulties trying to accomplish this.
Therefore, BBMRI.nl is developing an expert meeting on making health data and health care data available for research. We aim to gather successful experiences, lessons learned but also want to find out what new items would really facilitate organisations in their efforts to share, use and reuse each other’s data.
We hope to come to a ‘guide to optimal data sharing’ including use cases, practical tips & tricks, and suggestions for better collaboration.
To make the Expert meeting a success, we would appreciate your input and suggestions: Would you like to be involved in preparing the expert meeting? Would you be interested in participating and share your ideas on sharing (health)care data or your experience? What would you like to learn from the Expert meeting or to be included in a possible guide to optimal data sharing? Any specific topic that you would like to be addressed, either legal, ethical, practical, on communication or otherwise? Please send an email to Robin Verjans, BBMRI.nl program manager.
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Biobanks reaching out to the general public The current Corona pandemic once again highlights the important role of biobanks in medical research and finding new and better treatments. The more surprising side is that most people do not even know that biobanks exist! BBMRI.nl would like to change that.
BBMRI.nl wants to help biobanks reach out to the general public and is preparing a manual for Dutch biobanks on how to organize a Biobank Day.
Has your biobank been involved in public outreach activities such as an open Biobank Day or similar? Then please share your expertise and experience by mailing Christine Lutzkendorf at BBMRI.nl.
Please also mail Christine if you would like to be involved in a Biobank Day anytime in the future. We will keep you posted on future developments. |
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Investigating COVID-19 and Cardiovascular disease What is the role of cardiovascular disease in the COVID-19 pandemic? To answer that question, the CAPACITY registry was set up. Requests for CAPACITY data are handled by a committee that uses Podium.
CAPACITY aims to collect data on the cardiovascular history, diagnosis and occurrence of cardiovascular complications in COVID-19 patients in a standardized manner. This will help to find out whether cardiovascular complications occur more often in patients with COVID-19, and whether COVID-19 patients with cardiovascular disease are more vulnerable.
Researcher from all over the world can request CAPACITY for data. The CAPACITY Data Access Committee (DAC) uses Podium to review and handle the requests. The DAC will review requests every week. At this moment 11 requests have been submitted, of which 6 have already been approved.
Find out more about CAPACITY here.
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