Ethically governed research
Research and academic collaboration
Propose a project involving lived-experience participation, existing services or eligible aggregated data. Every proposal is reviewed before FND Connect commits.
How proposals are reviewed
- Initial suitability
- Institutional identity verification
- Research purpose
- Project classification
- Ethics and governance requirements
- Participant involvement
- Requested data access
- Data protection assessment
- Clinical and safeguarding risks
- Final approval or rejection
Data access levels
- No additional data access
- Public — existing approved aggregated information
- Verified professional — additional aggregate views already authorised in the clinician research portal
- Project-specific research access — only under a separately approved arrangement
Being verified as a clinician does not automatically grant project-specific research privileges. Existing account permissions and opt-out choices are preserved.
How to read SeizeControl information
- SeizeControl records are self-reported information contributed by people using the platform.
- There is selection bias: people who use a digital tool are not a random sample of everyone with FND.
- Logging rates differ between users and some information is missing.
- Symptom descriptions vary.
- The dataset does not fully represent the wider FND population.
- Reported associations are not demonstrated causes.
- FND Connect does not claim treatment effectiveness without appropriately designed studies.
Approved public projects
Approved projects are listed here only where publication has been authorised. There are none to show yet.