Introduction: The development and establishment of a new schizophrenia disease-based registry, MOSAIC (the Management Of Schizophrenia In Clinical Practice), was established in 2012 to address important gaps in our understanding of key symptom domains and best practices in care.
Objectives: To describe the 5-year longitudinal course of schizophrenia and patterns of treatment at all illness stages, and estimate the burden on patients, caregivers, and providers (2013–2018).
Methods: Goals included: geographic diversity of healthcare sites in the US, diversity within type of care site, diversity among patients, and patient assessment independent of the treating clinician practice, to minimize influence of study activities on usual care. A network of Patient Assessment Centers (PACs) was established to support proximal care sites. Inclusion criteria included: age ≥18 years and English speaking with a diagnosis of schizophrenia, schizophreniform, or schizoaffective disorder. Assessments are to occur quarterly in year 1 and at 6-month intervals thereafter, with caregiver and clinician evaluations documented every 6 months for 5 years.
Results: Fifteen PACs have been identified, with site initiation ongoing. PACs are located in 12 states with 30 proximal sites representing: 39% community mental health centers, 38% academic medical centers, 8% Veterans Affairs medical centers, and 15% hospital-based or practice-based centers.
Conclusions: The burden of schizophrenia is substantial. In the absence of large-scale registries describing patients with schizophrenia, MOSAIC represents a unique opportunity to observe patients in various treatment settings. The design of this registry may provide a model for other observational longitudinal studies of various psychiatric disorders.