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NCT Number: NCT03811808

Multiple System Atrophy Multidisciplinary Clinic

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.

Recruiting

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Key information

Conditions

Multiple System Atrophy (MSA) Autonomic Nervous System Diseases Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Movement Disorders Multiple System Atrophy Nervous System Diseases Neurodegenerative Diseases Primary Dysautonomias Synucleinopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Multiple System Atrophy-Quality of Life (MSA-QoL)

    Time frame: 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 outcomes

  1. Unified Multiple System Atrophy Rating Scale (UMSARS)

    Time frame: 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.

  2. Caregiver Burden Index/ The Zarit Burden Interview

    Time frame: 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.

Other outcomes

  1. Composite Autonomic Symptom Score (CONPASS 31)

    Time frame: at 5 year evaluation

    Compass 31 scale includes 31 questions and it will be used to assess autonomic symptoms that provides clinically relevant scores of autonomic symptom severity based. The higher the score the more autonomic symptoms present

  2. Center for Epidemiologic Studies Depression Scale (CES-D)

    Time frame: at 5 year evaluation

    The CES-D measures symptoms defined by the American Psychiatric Association' Diagnostic and Statistical Manual (DSM-V) for a major depressive episode. The higher the scores and indicative for depression present.

  3. The Orthostatic Hypotension Questionnaire (OHQ)

    Time frame: at 5 year evaluation

    The OHQ is used to assess the comprehensive symptom burden and severity of neurogenic orthostatic hypotension (NOH).

Study contacts

Contact information is provided by the study sponsor or research team.

Amy Conger

CONTACT

[email protected]

214-648-0214

Steve Hopkins, CCRC

CONTACT

[email protected]

214-648-9275

Sponsors and collaborators

Lead sponsor

University of Texas Southwestern Medical Center

Other

Registry information

Important dates

Study start
2016
Primary completion
2028
Study completion
2028
First posted
Jan 22, 2019
Registry last updated
May 22, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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