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:

• Your email address, to send you information about the study and links to the online surveys.
• Basic demographic information, including your age, age at diagnosis, gender, ethnicity, country of residence, and stakeholder group (e.g. patient, clinician, researcher).

If you participate in the consensus meeting, we may also collect:

• Your name (if you choose to share it during the meeting introduction – you may use a pseudonym if preferred).
• A video and audio recording of the meeting, to ensure accurate documentation of the discussion. This will be made only with your verbal consent at the start of the meeting. If any participant does not agree to being recorded, the session will not be recorded, and detailed notes will be taken instead.

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.

• Your email address will be used only for sending you the survey and informing you about the study results. It will be stored separately from your survey responses.
• No person outside the research team will have access to your identifiable information.
• Once you submit the survey, your responses will be anonymised. The research team analysing the data will not be able to link your answers to you personally.
• Anonymised and summarised survey results will be used in presentations, publications, and reports aimed at the academic, public health, and patient communities.
• Survey results may also be shared with other Delphi participants in later rounds, but only in anonymised, aggregated form.

International data sharing

Your identifiable data will not be shared outside the UK

How long will your data be kept?

• Email addresses and recordings will be deleted once the study is complete or earlier if you request withdrawal.
• Anonymised survey responses and transcripts will be stored securely for 25 years.

What happens to the recordings and transcripts?

• Recordings will be used to create accurate transcripts and meeting summaries.
• Transcripts will be pseudonymised and reviewed for accuracy.
• Once transcripts are finalised, the original recordings will be permanently deleted.

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. 

Please contact the research team if you require further information on data processing or a printed version of the webpage link above.

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.