A Delphi consensus project initiated by the World Health Organization in collaboration with ISARIC.
The aim of this research is to decide what long term effects (sequelae) of acute brain infection called 'outcomes' are the most important to include in research of meningitis, encephalitis, and meningoencephalitis and how to measure them.
If you have any queries or concerns, please do contact the study team.
Sign up to participate Email us at COS@isaric.org or anastasiia.demidova@kcl.ac.ukFollowing a rigorous Delphi consensus process involving patients, caregivers, clinicians, and researchers from around the world, seven core outcomes have been agreed for inclusion in all future research on adult brain infection sequelae — meningitis, encephalitis, and meningoencephalitis.
These outcomes should be measured and reported in all observational studies and clinical trials of adult brain infection sequelae, enabling findings to be meaningfully compared across research programmes worldwide.
With the Adult Core Outcome Set now agreed, the COSMEMS project is moving forward on two important fronts: identifying the measurement instruments for the adult COS, and extending the work to agree upon the outcomes for children and young people.
The next step for Adult COSMEMS is to reach consensus on the instruments for measuring each of the seven agreed core outcomes. This will ensure that future research uses standardised, comparable methods — making it possible to combine and compare findings across studies worldwide.
We are inviting people with lived experience, caregivers, clinicians, and researchers to participate in this next stage.
We are now developing a Core Outcome Set specifically for research on brain infection sequelae in children and young people. The following groups are invited to take part:
An outcome is something that we look at to understand how a person is doing after an illness.
For example, after a brain infection, an outcome could be if someone has problems with hearing, learning, movement, or behaviour. These outcomes help families, doctors, and researchers understand what support or treatment might be needed.
People who have experienced brain infection sequelae (meningitis, encephalitis, meningoencephalitis) and their family members.
Clinicians who treat patients with meningitis, encephalitis, and meningoencephalitis sequelae.
Researchers studying meningitis, encephalitis, and meningoencephalitis sequelae.
Before the survey, we will arrange an online meeting where we will explain the purpose of the project, go over the list of potential outcomes that we have developed, and answer any questions.
The survey will be completed online. You will be asked to rate how important you think each outcome is. You can also suggest additional outcomes if you feel something is missing.
We will hold an online meeting to share the overall results from Survey 1 and discuss them together. You will have a chance to suggest new outcomes, improve wording, or propose combining similar ones.
You will rank the same list of outcomes as in Survey 1, plus any new ones suggested by participants. You will see your previous ranking and the group's ranking to help you decide.
After Survey 2, we will hold an online meeting to discuss the results and agree on the final list of core outcomes.
We will move on to the next phase of the project, which aims to select appropriate measurement instruments for each of the core outcomes. Participants from the first phase will be invited to take part.
There are no anticipated risks associated with participating in this study. However, reflecting on personal experiences with meningitis, encephalitis, or meningoencephalitis may be emotionally challenging for some participants. You are free to skip any questions that make you uncomfortable.
This research will not involve any form of treatment or drug trial.
There will be no direct benefit to you as a result of completing this research, but your participation will be valuable and is likely to help to improve the design of future research related to brain infection. This will ultimately benefit patients by ensuring that treatment studies focus on the most important outcomes.
Kings College London is the Sponsor of this research and is responsible for looking after your information.
We are committed to protecting your privacy and handling your data responsibly, in accordance with UK data protection laws, including the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018.
We will collect:
If you participate in the consensus meeting, we may also collect:
AI-generated notes may also be used to support the transcription process.
All data will be stored securely on encrypted servers at King's College London. Access to identifiable data (e.g. email addresses, video recordings) will be restricted to authorised members of the study team. Survey responses will be anonymised and stored in a password-protected file for up to 25 years, in line with King's College London's research data retention policy.
International data sharing: Your identifiable data will not be shared outside the UK.
How long will your data be kept?
What happens to the recordings and transcripts?
Future use of data: An anonymised version of the final dataset may be archived for ethically approved future research. If this happens, it will only include non-identifiable data.
Further information on how King's processes research data can be found on the King's College London website.
If you do decide to take part, but later change your mind, you may withdraw at any point by pressing the 'Exit' button or closing the browser. You do not need to give any reason for withdrawing.
The quality of the study depends on participants completing both Survey 1 and Survey 2. Therefore, please consider if you'll be willing to do both surveys before you decide to participate. This helps us to ensure that all participants are heard and contribute to the results equally.
You may withdraw the data you provided before the discussion meeting held between Round 1 and Round 2 of the survey. After this point, withdrawal of the data will no longer be possible, as the anonymised results will have been presented to participants during the meeting and may have influenced their opinions and subsequent discussion.
This project is being funded by the World Health Organization.
The results of the project will be published in an open-access academic journal. We will report the overall findings of the study, including aggregated survey results and summarised demographic information of participants. Reports from the consensus meeting and related discussions will also be included in anonymised form.
You may indicate whether you would like your name to be acknowledged in the study reports. This is entirely your choice. In line with our usual practice, we aim to list all study participants as authors on the publication; however, this will not be linked to any specific responses you have provided. If you prefer not to be named, we will fully respect and support your decision.
If the anonymised dataset is made publicly available, we will include information on how to access it in the final publication. A copy of the published research will also be shared with participants who express interest.
Before taking part, please read the information sheet that applies to you. Each sheet explains the study purpose, what participation involves, your rights, and how your data will be handled.
Aged 16–17 who have personally experienced sequelae of meningitis, encephalitis, or meningoencephalitis.
Written in plain language — explains what to expect, your right to withdraw at any time, and how your answers stay private.
Read / Download PDFFor parents or guardians of children aged 0–17 affected by brain infection sequelae who are considering allowing their child to participate.
Covers parental consent, data protection, and how to withdraw your child at any stage.
Read / Download PDFFor adults aged 18+ who experienced brain infection sequelae as a child, family members and caregivers, healthcare professionals, and researchers.
Provides full study details, consent process, and data handling information under UK GDPR.
Read / Download PDF