New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases

UCL Great Ormond Street Institute of Child Health has responded to the considerable anxiety and confusion among many people living with rare diseases about their level of risk from COVID-19 and the precautions they should take.

For patients

A team of clinical genetics doctors working in collaboration with the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT company) have developed a patient interactive tool for people with rare diseases.

This patient tool is a quick online questionnaire that allows patients to better understand their risk of Covid-19 and is based on advice from major specialist colleges in the UK. 

For clinicians and patients

The team involved has also made the underlying decision making grid available for better understanding of how risk is calculated. It is intended to be a helpful general guideline for clinicians and people with rare genetic disease, to help them decide on the degree of self-isolation. Something that has posed a difficult task for many people as outlined in a recent article in the BMJ. This work is an amalgamation of COVID-19 risk advice from relevant specialties as well as BSGM’s COVID-19 statement.

View the grid here: https://www.bsgm.org.uk/media/11697/covid-risk-assessment-grid-for-rare-disease-version-16-26052020-with-links-for-bsgm.pdf

PLEASE NOTE: The core purpose of the tools is to open a conversation with the patient’s primary physician – it does not replace individualised advice. Please follow the instructions provided with the online tool and the grid.

Please direct any questions or feedback to Dr Elizabeth Forsythe or Dr Lara Menzies