Edinburgh Long Covid Study

People with Long Covid have described experiencing cognitive problems, including problems with memory, concentration and judgement. It is possible that these problems are the result of different causes in different people. By using a variety of clinical assessments and testing, this study will provide detailed clinical descriptions and diagnoses to effectively plan and use appropriate treatment pathways.

The aim of this project is to distinguish what proportion of patients experiencing cognitive symptoms following infection with COVID-19 have positive evidence of:

• direct central nervous system infection or inflammation
• cerebrovascular disease
• underlying neurodegenerative disease
• functional cognitive disorder
• psychiatric disorder
• an alternative general medical explanation

It is hoped that this research will establish clear clinical explanations for patient’s cognitive impairment in Long Covid. This will enable the provision of effective treatment by healthcare practitioners to patients.

Project team

The project is led by Professor Alan Carson.

University of Edinburgh team members are David Breen, Siddharthan Chandran, Nadine Cosette, David Gillespie, Alison Green, David Hunt, Laura McWhirter, Catherine Pennington, Craig Ritchie, Jon Stone, Joanna Wardlaw.

Project title and funder

The full name of the study is "Clinical Phenotyping to Enable Targeted Treatment of Persistent Cognitive Symptoms After COVID-19". It is funded by a grant to the University of Edinburgh from the Chief Scientist Office of the Scottish Government (CSO).

Where and when?

The Edinburgh Long Covid Study will take place at the Anne Rowling Regenerative Neurology Clinic. Participants will be recruited from the Lothian area.

Participation is by referral only; please do not contact us to ask to join the study as we will not be able to enrol you.

The research is in collaboration with clinicians and academics from around the United Kingdom.

Recruitment of patients started in April 2021 and is scheduled to continue until December 2021. We aim to complete the research by February 2022.

Participation criteria

The research aims to recruit a total of 100 adult participants, 50 via local GP referral and 50 via a local database of patients hospitalised with COVID-19. 

Participants will be considered suitable for the research if:

• They are aged 18 or over.
• They have history of a laboratory-confirmed SARS-COV-2 infection and a clinical diagnosis according to the European Centre for Disease Prevention and Control for COVID-19.
• They have reported or observed cognitive symptoms persisting at least three months after COVID-19.

Taking part in the research project is not suitable for everybody. The main reasons somebody may not fit the criteria are:

• If they are unable to give informed consent.
• They have serious psychiatric comorbidity.
• There is evidence or a strong clinical suspicion of factitious disorder.

 

What is involved in taking part?

If a recruiting GP believes that a patient is suitable for the research project they will refer the patient to The Edinburgh Long Covid Study research team.

A member of the research team will contact the potential participant to explain the study to them and will send a copy of the participant information sheet to the potential participant. If the potential participant is willing to take part in the study an appointment will be arranged for them to attend The Anne Rowling Regenerative Neurology Clinic.

At this appointment the participant will give their consent to take part in the study and will complete a series of assessments and questionnaires with a research assistant. All participants will then undergo a structured clinical assessment by a Consultant Neuropsychiatrist and will have their bloods taken.

If the participant provides consent, and no contraindications are found, participants will undergo a brain MRI scan, lumbar puncture and additional study investigations where clinically relevant.

A team of Consultant Neurologists and Neuropsychiatrists will meet to conclude an accurate diagnosis for the participant.

 

Risks and benefits

It is not believed that there are any risks to taking part in this research. Participants will be required to undergo clinical assessments and tests which may be considered tiring or anxiety-provoking. Participation in this research is only for those who wish to undergo such a thorough clinical assessment.

The state of the art clinical assessment offered would otherwise be unavailable and so it is possible these assessments will lead to patients receiving a new diagnosis and enable access to targeted treatment.

FAQs

I have Long Covid, can I volunteer to take part in this research?

Unfortunately we are unable to sign up volunteers who contact the research team.

Why can’t I volunteer to be a participant in this research?

To become a participant in this research project, you must be referred by a GP within the appropriate catchment area. This is to make sure that you meet the research eligibility criteria and are able to attend the clinical assessments.

What will happen if I receive a new diagnosis as a result of taking part in this research?

All participants will remain under the care of the Department of Clinical Neurosciences, Royal Infirmary of Edinburgh until they have been triaged on to the appropriate service dependent on findings from their clinical assessment and test results.

Where can I get more information about Long Covid?

NHS provided ‘Your COVID recovery’: www.yourcovidrecovery.nhs.uk

Patient support organisations: www.longcovidsos.org