5. TARGETED SEQUENCING OF GENES MOST LIKELY TO HARBOR RARE CAUSAL VARIANTS IN SCHIZOPHRENIA

About one in 100 people worldwide are diagnosed with schizophrenia. Many people advocate for a name change for the condition, pointing to the stigma and discrimination associated with the term “schizophrenia”, as well as to how the name poorly characterizes features of the illness. The purpose of this project was to collect opinions from a broad, diverse sample of stakeholders about possible name changes for schizophrenia. The project represented a partnership between researchers, clinicians, and those with lived experience with psychosis. The group developed a survey to assess opinions about the need for change in the name schizophrenia as well as potential alternate names. We accumulated 1190 responses from a broad array of community stakeholders, including those with lived experience of mental illness, family members, clinicians, researchers, government officials, and the general public. Findings indicated that the majority of respondents (74.1%) favored a name change for schizophrenia. Most (71.4%) found the name stigmatizing. Of the proposed alternate names, those with the most support included “Altered Perception Syndrome”, “Psychosis Spectrum Syndrome”, and “Neuro-Emotional Integration Disorder”. Survey findings provide strong support for renaming schizophrenia. Most expressed hope that a name change will reduce stigma and discrimination.