FND Research Connect provides support to researchers in two ways: recruitment support, and provision of anonymised data for studies.
Using FND Research Connect’s database of prospective research participants, we can help researchers recruit to both in-person and online studies on functional neurological disorder. After project approval, researchers supply us with their inclusion and exclusion criteria (and location for in-person studies). Using these criteria, we can then contact people in our database who fulfil the criteria inviting them to contact the researchers to express their interest.
FND Research connect maintains a database of clinical and demographic data of participants who have FND, have had FND in the past, and controls who have never had FND. The primary reason for collection of this data is to facilitate recruitment support, however most of our participants have also given secondary consent for anonymised use of this data. Its potential large sample sizes and its longitudinal nature (participants update their information every four months) make it amenable to answering questions about the nature and time course of FND. Researchers on approved projects can access anonymised subsets of this data relevant to their projects for these purposes.
To access either recruitment support, or anonymised participant data, researchers must supply evidence of approval by a human research ethics committee, satisfactory scientific peer review of their project, and a satisfactory data management plan.
Researchers must be affiliated with either an academic institution or a health service. Researchers affiliated only with a health service must provide evidence of previous published scientific work by at least one active member of the research team.
A record of all current research projects assisted by FND Research Connect is available on our website here. Results of studies that have received support from FND Research Connect are available here.