Multiple System Atrophy Multidisciplinary Clinic

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03811808

Enrollment

200

Registered

2019-01-22

Start date

2016-03-01

Completion date

2028-03-01

Last updated

2026-05-22

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Multiple System Atrophy (MSA)

Brief summary

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

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
Multiple System Atrophy-Quality of Life (MSA-QoL)	at 5 year evaluation	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.

Secondary

Measure	Time frame	Description
Unified Multiple System Atrophy Rating Scale (UMSARS)	at 5 year evaluation	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.
Caregiver Burden Index/ The Zarit Burden Interview	at 5 year evaluation	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.

Countries

United States

Contacts

CONTACTAmy Conger

Amy.Conger@UTSouthwestern.edu214-648-0214

CONTACTSteve Hopkins, CCRC

Steve.Hopkins@UTSouthwestern.edu214-648-9275

PRINCIPAL_INVESTIGATORSteven Vernino, M.D.

University of Texas Southwestern Medical Center

Outcome results