Objective: This paper documents the establishment of the Schizophrenia Research Register of the Neuroscience Institute of Schizophrenia and Allied Disorders (NISAD). This register aims to provide a volunteer pool of people with a clinical diagnosis of schizophrenia who are willing to consider participating in research projects. This unique resource is accessible to the general scientific research community.
Method: The Register, which operates as a standalone, computerized relational database, maintains demographic and clinical information about individuals with schizophrenia recruited through media campaigns, and general health and non-government support agencies. Preliminary data are reported on the first 400 people with schizophrenia who registered on the database, together with selected comparisons with data from the national Low Prevalence (psychotic) Disorders Study (LPDS).
Results: Individuals currently on the Register have a mean age of 38.74 years (SD = 11.41) and are predominantly Australian born (85.1%), which is consistent with data from the LPDS. However, the gender distribution is more balanced compared with the LPDS (53.8% vs 65.4% males) and proportionately more registrants are married or in de facto relationships (18.4% vs 10.8%). Registrants also tend to have lower current symptomatology and higher functioning relative to participants in the LPDS.
Conclusions: The Register provides a unique and invaluable educational and research resource, as well as a complementary recruitment source for researchers who would otherwise rely on samples drawn primarily from mental health services.