Abstract
Background/Objectives Functional neurological disorder (FND) is a common, disabling, and usually chronic neurological condition. After a long period of neglect, research interest in the area has grown rapidly in recent years. People with FND (pwFND) often express interest in enrolling in any research studies on the condition, and recruitment is frequently a rate limiting factor in studies.
The traditional method of recruiting for studies: advertising and relying on prospective participants to make contact, is imperfect. It puts an onus on patients to monitor multiple sources for notification of new studies, meaning that people who might have enrolled in a study may not find out about it, or enrol later than they otherwise might have. Research recruitment databases have been shown to reduce this problem in other conditions.
Methods We established a research recruitment database, FND Research Connect (www.fnd-research.org) where pwFND can prospectively register to be contacted about studies for which they meet inclusion criteria, and to have the information they provide for screening purposes used in an anonymised form for epidemiological research.
Results On a ‘soft’ initial release to Australia only, 284 pwFND enrolled for the database in the first month. One study is already being prepared for publication using data from the database. Worldwide release is planned for early March 2024.
Conclusion/Discussion FND Research Connect appears to provide a meaningful increase in the ease with which pwFND can find studies, and FND researchers can recruit for studies.
