An Observational Study of Patients Living With Chronic Neurological Diseases

A detailed analysis of available demographics (age, race, sex, country of birth, insurance status), medications, co-morbidities, and medical history from sites across the US will inform the profile for this patient population. Data from retrospective and prospectively collected medical records will be curated and analyzed to characterize disease natural history and current treatment paradigms. These data may also establish incidence rates of events of special interest. Collection of prospective medical records for each patient enables the continuation of these analyses longitudinally for changes and progression. Part of the characterization of disease or living with a chronic disease may also be informed by patient reported outcome (PRO) measures and care partner surveys.

The study will evaluate the characteristics of patients receiving various treatments, effectiveness of treatment, and medical events that develop while receiving treatment for ADRD, MCI, PD, or MS. Interval disease and medical events may vary depending on the patient's stage and type of disease and extent of co-morbidities. The progression of pre-existing co-morbidities and variances across populations will also be evaluated.

The type, dose and duration of disease-specific therapies will be closely followed with a goal of monitoring treatment paradigms and various combination regimens for clinical response and disease stabilization/progression.

Health care provider type, clinic setting, reason for initiating/not initiating/adjusting dosing of treatments, reason for discontinuing/switching treatments, and monitoring outcomes on and off treatment, will be captured as available in the provided EHR and/or through linked data. Disease-specific quality measures will be selected and evaluated

Longitudinal clinical outcomes and disease progression will be assessed. Self and proxy-reported patient health measures collect information directly from patients or their informants to measure physical, mental, and social health. These measures can help clinicians better understand how the disease state and/or various treatments affect what patients are able to do and the symptoms they experience beyond what is typically derived and reported in the EHR as part of traditional clinical evaluations. The information can also be used to help patients make informed decisions about their healthcare and treatment options. Care partner surveys can help define the prevalence and needs of care partners who provide support and care to people living with ADRD, MCI, PD, and MS.

• Identify deficiencies and best practices in care of patients living with neurological diseases
• Develop a technology infrastructure to evaluate quality measures to support clinicians and clinical decision making

TARGET-NEURO will enroll an Age Cohort of patients aged 60 years and older, who do not carry a diagnosis code for dementia or mild cognitive impairment. Patients enrolled in this cohort will have their structured and unstructured EHR data routinely screened using the PDM algorithm. 31 Over time, the refreshed data among Age Cohort patients will be screened for a newly presenting dementia diagnosis or mild cognitive impairment code that suggests symptomatic disease and compared with the PDM prediction. Records of those patients will be further evaluated to confirm clinical evidence of disease (positive case) and the patient will continue to be passively followed in the Disease Cohort for outcomes. This exploratory aim enables further validation of the generalizability of the PDM across more health centers and diverse populations.