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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.
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:
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| MSA patients | patients diagnosed with possible or probable multiple system atrophy |
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| 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 |
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Composite Autonomic Symptom Score (CONPASS 31) | 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 | at 5 year evaluation |
| Center for Epidemiologic Studies Depression Scale (CES-D) |
Inclusion Criteria:
Exclusion Criteria:
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Adults 18 years or older with diagnosis of possible or probable MSA
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Amy Conger | Contact | 214-648-0214 | Amy.Conger@UTSouthwestern.edu | |
| Steve Hopkins, CCRC | Contact | 214-648-9275 | Steve.Hopkins@UTSouthwestern.edu |
| Name | Affiliation | Role |
|---|---|---|
| Steven Vernino, M.D. | University of Texas Southwestern Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| UT Southwestern Medical Center | Recruiting | Dallas | Texas | 75390 | United States |
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| ID | Term |
|---|---|
| D019578 | Multiple System Atrophy |
| ID | Term |
|---|---|
| D054969 | Primary Dysautonomias |
| D001342 | Autonomic Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D001480 | Basal Ganglia Diseases |
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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 |
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. |
| at 5 year evaluation |
| The Orthostatic Hypotension Questionnaire (OHQ) | The OHQ is used to assess the comprehensive symptom burden and severity of neurogenic orthostatic hypotension (NOH). | at 5 year evaluation |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |