27 July 2021

One year ago, the EURO-NMD has launched a survey for Hospitals to feedback the situation regarding COVID-19 and the Neuromuscular patients. We received 24 Surveys that were complete and accurate. from different countries: Italy (9), Netherlands (3), Spain (1), Cyprus (1), Germany (2), Belgium (3), Estonia (1), France (1), Czech Republic (1) and Slovenia (2). Twenty two Hospitals/Institutions are represented.

Time Range 19 respondents filled the survey in March 2020, 4 in April 2020 and one in June 2020.

What are the recommendations of your hospital regarding the normal follow-up of patients with NMDs, in general?


Replace onsite visits with Phone consultations/email contact (all)
Is there a hospital website where the reccommendations are provided? 5 centres did not have online information for patients and one respondent ignored the answer. The remaining 18 had some form of online information.
Do the recommendations change in case of immune compromised patients? Although 10 Centres had recommendations for Immuno-compromised patuients, they seem to be generic ones.
Do you have specific recommendations for NMD patients who get in contact with a patient with COVID-19? Some centres follow guidelines regarding this that recommend essentialy testing, isolation and medical call if symptoms. Two centres (Estonia and Czech Republic) stated not having guidelines regarding this point.
Do you have specific recommendations for NMD patients with a suspicion of being infected SARS-CoV-2? Three centres had no specific instructions regarding this, the remaining had recommendations for isolation, testing, clinical monitoring (in one case, home oxymetry) and medical contact for advice. In most cases, however, there was not a significant difference in the national guidelines between  patients with or without neuromuscular disorders and sometimes not even specific measure for immuno-compromised populations.
Do you / your government suggest that the NMD patient does NOT attend school and is put into isolation? 21 answered yes (either the central government or a local authority has closed schools). 3 answers were negative, with one saying that the National Network for NMD recommended it anyway.




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