Patient Reported Outcomes & Symptoms

Given the varying clinical manifestations of disease that are present across racial groups, it is necessary to assess the symptom patterns that encourage patients and their family members to seek diagnosis and treatment. Understanding patient priorities for diagnosis and treatment and developing patient-centered outcomes tailored to those concerns will elucidate promising targets for research recruitment and treatment interventions. Study participation is largely motivated by the expected and hoped for outcomes of the research. If clinical trials are not targeting the outcomes and symptoms deemed most important to patients and their caregivers, participation in research and clinical trials will remain low. By identifying patient priorities and patient-centered outcomes, we can motivate research participation, maintain retention longitudinally, and prioritize treatments that meaningfully improve quality of life. In addition, symptom reporting is a core feature of the diagnostic criteria in neurodegenerative disorders. Increasing the parity of symptom reporting during early stage diagnosis will support accurate screening and streamline treatment.