Some of the patients with a neuromuscular disease can be more vulnerable to COVID19 infection. Still much needs to be learned about the indications for NMD patients and how to act in case of COVID 19 infection. Also, the approaches in each country may be different. Therefore, we would like to know how this crisis is being handled all over Europe. This may help in the management of our patients and will help to give patients the best possible care across all countries.
We have prepared two short questionnaires to collect this information:
Questionnaire for clinicians (and patients) to report cases of patients. This survey aims at collecting data on all NMD patients suspected of COVID-19 infection. This way we can increase our understanding of the effects of the infection in the neuromuscular population.
Survey for centres to provide information on the specific measures that have been taken in their country.
Our team will gather the surveys and the results will be made available through our website ern-euro-nmd.eu
To protect the privacy of patients no information such as name, date of birth and patient ID will be collected and possible identifiable data will be removed. We will only use this information that is provided here to help collate valuable information about NMD patients who have contracted the COVID-19 virus. The information will be sorted on our secure server for a period of time until we have to opportunity to download it. Once this has been done, we will remove the information from our server. Anything gathered here will be only used in this context and will not passed on to any third parties.