Neuro-Covid Registry

The EAN NEuro-covid ReGistrY (ENERGY)

The EAN NEuro-covid ReGistrY Consortium (ENERGY) intends to provide epidemiological data on neurological manifestations in patients with COVID-19 infection reported by neurologists in outpatient services, emergency rooms, and hospital departments.

Until recently, information available on the involvement of the nervous system during this pandemic was based on case reports and retrospective clinical series. These sources are open to selection bias, although there are indicators that neurological complications in COVID-19 patients are associated with a worse outcome. On the contrary, a registry can shed some light on the burden and general characteristics of neurological complications of the COVID-19 outbreak and the association of these complications with the demographic and clinical features of the affected individuals.

In the EAN ENERGY Registry, neurologists are asked to implement the study protocol in their institution/clinic, to assess and record demographic and other data, neurologic symptoms and signs in confirmed and suspected COVID-19 patients.

The ENERGY protocol has been translated into different languages (Spanish, German, Italian, Russian and Portuguese) assuring a straightforward implementation in different countries around the world.

The ENERGY Registry has also established a series of collaborations with different centres in the U.S., Europe and Latin America ensuring a representative inclusion of patients and strengthening worldwide partnerships to overcome together this devastating pandemic.

Through collective participation and collaboration, we will be able to provide a vital resource for neurologists and other clinicians to improve care for COVID-19 patients.

In this online repository you will find a copy of the:                                                                                            

  • Registry Protocol
  • A guide to the Case Report Form (CRF)
  • Site Agreement
  • Instruction guide on inputting cases

In the meantime, we would suggest that you begin the process of obtaining the required approval from your local ethics committee/board.

The site agreement should be signed by the authorised person at your institution and returned to us along with confirmation that the relevant ethics approval has been obtained for your region/institution (please send a copy of the ethical approval document).

The relevant sections to be completed by your institution are highlighted with comments. Please note that you are welcome to suggest changes to the site agreement. Please do so in the attached document. However, EAN cannot accept any individual agreements substantially different from this one. If you need a translation of the agreement, we can provide you with one.

 

IMPORTANT

Once we have received the signed agreement and confirmation of ethics approval, we can give you access to the online CRF right away.

 

You can notify us via email at: covidregistry(at)ean.org

If you require any further assistance or information, please do not hesitate to contact us.  

We look forward to our collaboration and alliance in the fight against the COVID-19 pandemic.

Please register your contact information. We will follow up with all eligible institutions to provide further information on the Registry.