CompletedNot Applicable

Quality of Life of Caregivers and Patients Suffering From Multiple System Atrophy

France130 participantsStarted 2021-07-01

Plain-language summary

Multiple system atrophy (MSA) is a rare and fatal neurodegenerative disorder that cause as other neurodegenerative diseases profound declines in functioning and thus, require caregiving for assistance with daily living. The aim of the study is to evaluate the effect of a multimodal intervention as proposed by the NYU Caregiver Counseling and Support Intervention (NYUCI) on the quality of life of patients and their caregivers.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Patients Inclusion Criteria : * Patients suffering from "possible" or "probable" MSA according to clinical consensus criteria * Living at home * Presence of at least one close person (family caregiver or not) in the entourage * Unified Multiple System Atrophy Rating Scale (UMSARS) IV ≤4 * Written informed consent * Patient covered by the national health system Caregivers Inclusion Criteria : * Age \> 18 * Able to answer to study scales and survey * Written informed consent Patients Exclusion Criteria: * Unified Multiple System Atrophy Rating Scale (UMSARS) IV \> 4 * Absence of at least one close person Caregivers Inclusion Criteria : \- Enable to answer to study scales and survey

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Multiple System Atrophy Quality of Life (MSA-QoL) Score

Timeframe: Day 0

Multiple System Atrophy Quality of Life (MSA-QoL) Score

Timeframe: 6 month

Multiple System Atrophy Quality of Life (MSA-QoL) Score

Timeframe: 12 month

Trial details

NCT IDNCT04965922

SponsorUniversity Hospital, Bordeaux

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2024-06-26

View on ClinicalTrials.gov More Multiple System Atrophy trials

Plain-language summary

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.