AANEM Connect

Dear colleagues,
Report cases to the International Neuromuscular COVID-19 Database and become a member of the International Neuromuscular COVID-19 Consortium!
Over the last couple of months an international group of neuromuscular health care professionals have been working on creating an International Neuromuscular COVID-19 database to monitor and report the outcomes of COVID-19 occurring in patients with Neuromuscular Diseases. The database already includes almost 100 cases from various countries worldwide, including the UK, Spain, South Africa, The Netherlands and India.
There is an urgent need to understand outcomes of patients who acquire SARS-CoV‐2 infection and are receiving immunosuppressants and/or have disease features (e.g. cardiac or respiratory involvement) that may affect the outcome of COVID-19. This will help guide neuromuscular specialists in advising and caring for their patients.
 
The database it hosted by University College London (UCL) in the UK, at uses a secure RedCap platform; the database website can be found below:
https://www.ucl.ac.uk/centre-for-neuromuscular-diseases/news/2020/may/neuromuscular-covid-19-database  
We encourage colleagues to report ALL cases of COVID-19 in their neuromuscular patients, regardless of severity (including asymptomatic patients). Understanding less severe cases or even mild cases will help us understand further those who develop the most severe form. The contribution of contributions of colleagues reporting cases to the database will be duly acknowledged in publications arising from this international effort.
Target users are neuromuscular consultants / fellows / nurses / allied health professionals that become aware of NMD patients with COVID-19. We ask colleagues to report after a minimum of 7 days and sufficient time has passed to observe the disease course through resolution of acute illness and/or death. It is also possible for the reporter to return to the same case and update/complete the questionnaire.
We hope you will actively contribute to this voluntary reporting system. Through broad scale participation and collaboration, we will be able to answer these very pressing questions for our neuromuscular patients and their caregivers.
 The UK Health Research Authority (HRA) was consulted and advised that this project is considered to be a research database and that it does NOT require review by an NHS Research Ethics Committee (REC). It is a database involving previously collected and available, non-identifiable information. There is NO requirement for patient consent. Although this does not cover all nations in Europe and worldwide we believe this will be the position likely taken by many authorities across Europe/the world. Please check with your local authority if you are unsure. Please contact us if you require any additional details in order to obtain regulatory approval to submit cases in your country. 
The University of Kansas Medical Center IRB / REC also considers this to be retrospective data collection, therefore not requiring patient consent. But as indicated above please check with your local IRB.
With thanks and best wishes,
Mazen Dimachkie and Pedro Machado
mdimachkie@kumc.edu
p.machado@ucl.ac.uk