Abstract

The current COVID-19 pandemic has unfortunately resulted in many significant concerns for individuals with genetic disorders and their relatives, regarding the viral infection and, particularly, its specific implications and additional advisable precautions for individuals affected by genetic disorders. To address this, the resulting requirement for guidance and information for the public and for genetics professionals was discussed among colleagues nationally, on the ScotGEN Steering Committee, and internationally on the Education Committee of the European Society of Human Genetics (ESHG). It was agreed that the creation of an online hub of genetics-related COVID-19 information resources would be particularly helpful. The proposed content, divided into a web page for professionals and a page for patients, was discussed with, and approved by, genetics professionals. The hub was created and provided online at www.scotgen.org.uk and linked from the ESHG’s educational website for genetics and genomics, at www.eurogems.org. The new hub provides links, summary information and representative illustrations for a wide range of selected international resources. The resources for professionals include: COVID-19 research related hubs provided by Nature, Science, Frontiers, and PubMed; clinical guidelines; the European Centre for Disease Prevention and Control; the World Health Organisation; and molecular data sources including coronavirus 3D protein structures. The resources for patients and families include links to many accessible sources of support and relevant information. Since the launch of the pages, the website has received visits from over 50 countries worldwide. Several genetics consultants have commented on usefulness, clarity, readability, and ease of navigation. Visits have originated most frequently in the United Kingdom, Kuwait, Hong Kong, Moldova, United States, Philippines, France, and Qatar. More links have been added since the launch of the hub to include additional international public health and academic resources. In conclusion, an up-to-date online hub has been created and made freely available for healthcare professionals, patients, relatives and the public, providing categorised easily navigated links to a range of worldwide resources related to COVID-19. These pages are receiving a rapidly growing number of return visits and the authors continue to maintain and update the pages’ content, incorporating new developments in this field of enormous worldwide importance.

Highlights

  • In December 2019, it was recognised that the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), was being transmitted through the human population and causing the potentially fatal human coronavirus disease, COVID-19

  • In view of the quantity and quality of individual COVID-19related resources that had become established online around the world that were of great interest and usefulness to clinical and non-clinical genetics professionals and to the public, it was perceived by the authors, including educators and genetics health professionals, that it would be highly beneficial to create a freely accessible centralised online hub, providing direct links to a range of free, high-quality, informative and up-to-date websites

  • The web resources were initially identified by: personal web-searches; personal use of the resources; suggestions from professional colleagues; checking the websites of major organisations in the field of genetics designed for professionals and for patients; consulting other resources often used as reference sources by major international organisations; and the COVID-19-specific literature hubs run by major scientific publishers

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Summary

Introduction

In December 2019, it was recognised that the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), was being transmitted through the human population and causing the potentially fatal human coronavirus disease, COVID-19. Many highly informative online resources in relation to COVID-19 and to the causative coronavirus have been created These include online hubs directly linking to original genetic scientific publications, such as the Frontiers Coronavirus Knowledge Hub in addition to those provided by Nature Journals, Science Journal, Pubmed LitCovid, the RCSB (Research Collaboratory for Structural Bioinformatics) Protein Data Bank and institutions such as the National University of Singapore. Other websites have been established to provide more summarised information for professionals, such as Nextstrain (with its animated representations of sequencebased coronavirus global epidemiological data) and the European Reference Networks. Many of these COVID-19 information resources have been relatively recently created and may not all be well known or located online amongst other websites

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