Understanding the COVID risk for patients with rare diseases: new interactive tool

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 an interactive tool for people with rare diseases.

The 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. 

You can access the patient tool here: https://redcap.goshdre.com/surveys/index.php?s=TF7YNXMEN7

You may also be interested in the underlying decision making grid behind the tool, which the development team has made available to demonstrate how the tool calculates risk. 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. This is 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.

You can view the risk assessment calculation 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 these tools is to open a conversation with your physician – it does not replace individualised medical advice.