Multiple System Atrophy Multidisciplinary Clinic
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Multiple System Atrophy (MSA). Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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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.
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.
Primary outcome measures
- Multiple System Atrophy-Quality of Life (MSA-QoL) [Time frame: at 5 year evaluation]
Secondary outcome measures (2)
- Unified Multiple System Atrophy Rating Scale (UMSARS) [Time frame: at 5 year evaluation]
- Caregiver Burden Index/ The Zarit Burden Interview [Time frame: at 5 year evaluation]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- UT Southwestern Medical Center — Dallas
Identifiers
NCT: NCT03811808 · STU 082015-008