Multiple System Atrophy Multidisciplinary Clinic

University of Texas Southwestern Medical Center200 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

200

Conditions

Multiple System Atrophy (MSA)

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (1)

UT Southwestern Medical Center

Dallas, Texas, United States

RECRUITING

Outcomes

Primary Outcomes

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.

Time frame: at 5 year evaluation

Secondary Outcomes

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.

Time frame: 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.

Time frame: at 5 year evaluation

Central Contacts

Amy Conger

CONTACT

214-648-0214 Amy.Conger@UTSouthwestern.edu

Steve Hopkins, CCRC

CONTACT

214-648-9275 Steve.Hopkins@UTSouthwestern.edu

Data from ClinicalTrials.gov

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