NMD & COVID-19 – patient survey

As the European Reference Network for Neuromuscular diseases we would like to increase our understanding of the effects COVID-19 has on patients with existing neuromuscular conditions. We would be grateful if you could take a few moments to complete this online form to help us help the wider NMD community.

This second iteration of our form will now focus on those patients who have received a positive COID-19 test result or have shown COVID-19 symptoms.
Please only complete this version of the form if you have had a positive test result or COVID-19 symptoms.

Data gathered here will be freely available (in due course) to all members of our network and ultimately will go to help us improve peoples' lives.

We sincerely thank you for taking the time to complete this form.

We will only use this information you provide 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.

About you
Please note: This form should be completed separately for each patient. In other words, the information you enter here is about a single patient.
If you wish to let us know about another patient, please reload the page to refresh the form.

Please ensure this does not disclose the identity of the patient in any way. If you are completing this form for a second time, please try to use the nickname you used on the previous forms. This will allow us further to track to effects of COVID-19 on people with specific diseases whilst retaining their anonymity.

About the patient

BEFORE they contracted COVID-19

Please include all medications and dosage using a new line for each medication.

About the patient

they had COVID-19

Please enter the date that the positive test was taken.

About the patient

they have had COVID-19

We sincerely thank you for taking the time to fill out this short questionnaire during this very difficult and undoubted very busy time.

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The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern