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internInternational Neuromuscular COVID-19 Database
4 May 2020
Information regarding the paediatric & adult Neuromuscular COVID-19 Database, to monitor and report on outcomes of “Coronavirus Disease 2019” (COVID-19) occurring in patients with Neuromuscular Diseases. Guidelines and how to access the database is available here.
To report a case of COVID-19 to the International Neuromuscular COVID-19 Database CLICK HERE
The International Neuromuscular COVID-19 Database is a paediatric and adult database to monitor and report on outcomes of “Coronavirus Disease 2019” (COVID-19) occurring in patients with Neuromuscular Diseases. There is an urgent need to understand outcomes of patients who acquire “severe acute respiratory syndrome coronavirus 2” (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 and other clinicians such as specialist nurses and allied health professionals in advising and caring for their patients.
Please note, this survey is for health care professionals caring for paediatric or adult neuromuscular patients. Reporting a case to this registry should take 10-15 minutes. Please also report if you have a high suspicions of COVID-19 infection in your patients and indicate that this is unconfirmed. Patients’ identifiers such as name or date of birth are NOT collected.
We encourage neuromuscular clinicians to report ALL cases of COVID-19 in their neuromuscular patients, regardless of severity (including asymptomatic patients detected through public health screening). Understanding less severe cases or even mild cases will help us understand further those who develop the most severe form.
Please 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 although we appreciate your time is pressured and precious currently. You may not have access to information to answer all questions. Do your best.
After submitting a case you will receive a return code allowing you to return to the same case to update/complete data, if needed, by clicking the “Returning?” link on top right corner on the online form.
Contact Smaragda Agathou (s.agathou@ucl.ac.uk) if you have any questions about the database. Please note that this email address is for regulatory or technological clarifications about the database and NOT for patient data and queries.
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.
We were inspired by our colleagues in the rheumatology community who have put forth this helpful type of registry and urge anyone with information about COVID-19 cases in patients with rheumatic diseases to use the case reporting form on their sites:
https://www.eular.org/eular_covid19_database.cfm
FREQUENTLY ASKED QUESTIONS (FAQ’s):
Where will the data be stored?
The database collects anonymised patient data only. Identifiable reporter information is requested. We are working within GDPR regulation. The Neuromuscular COVID-19 data will be stored at University College London (UCL) in the United Kingdom. UCL is the data controller and data processor under GDPR.
When will I find out about any results?
We will provide the neuromuscular community with regularly updated summary information on reported cases. We do not yet know the frequency of these reports but anticipate it could be as frequent as fortnightly, depending on the influx of cases. This will enable the entire neuromuscular community to remain up to date regarding COVID-19 in patients with neuromuscular diseases.
What ethical approvals are in place?
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. The project was submitted as a "Service Evaluation" to the "Clinical Audit and Quality Improvement Subcommittee (CAQISC)". 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.