Multiple System Atrophy Multidisciplinary Clinic

Study Overview
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Brief Summary
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This is a prospective cohort study to examine the disease burden of multiple system atrophy and the impact of multidisciplinary care on quality of life and caregiver burden. Data will be collected through valid rating scales completed by patients and caregivers at home or in the MSA clinic.

Detailed Description
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Study Procedures: Participants and caregivers will attend a multidisciplinary MSA clinic one day every four months. In addition to the standard of care, they will be asked to complete both online and paper questionnaires, including the following: UMSARS (Unified MSA Rating Scale) MSA QOL CES-D OHQ Compass-31 BIC UPDRS SARA MDS Scale CGI MoCA Participants will be part of the study as long as they are a patient of the MSA clinic, and will be contacted for follow-up information up to five years.

Official Title
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Multiple System Atrophy Multidisciplinary Clinic

Conditions
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Multiple System Atrophy (MSA)

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Subject must be a patient in the UT Southwestern MSA clinic and be able to attend the multidisciplinary clinic every 4 months Patients with possible or probable MSA based on established criteria Subjects must be 18 years or older Exclusion Criteria: Patients that are unable to give consent Minor patients (younger than age 18) Non-English speaking patients Subjects that are diagnosed with dementia

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| MSA patients<br>patients diagnosed with possible or probable multiple system atrophy | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Multiple System Atrophy-Quality of Life (MSA-QoL) | The disease burden of MSA and impact of multidisciplinary care on the quality of life of patients as measured by the MSA-Quality of Life (QOL) questionnaire completed every four months by the patients. The scale measures how MSA affects a person's quality of life in day to day activities. The scale ranges from No problem to Extreme Problem. The More Extreme Problem sections selected the more their quality of life is affected by the disease. | at 5 year evaluation | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Unified Multiple System Atrophy Rating Scale (UMSARS) | The UMSARS completed every four months by the physician. The scale measures how MSA has progressed from baseline. The higher the score the higher the progression is. | at 5 year evaluation | 
| Caregiver Burden Index/ The Zarit Burden Interview | The disease burden of MSA and impact of multidisciplinary care on caregiver burden as measured by the Burden Index of Caregivers (BIC) questionnaire and The Zarit Burden Interview completed every four months by the caregivers. The higher the higher the score the more burden the caregiver has. | at 5 year evaluation |