Systematic Assessment of Laryngopharyngeal Function in Patients With Neurodegenerative Diseases
This study is gathering information about swallowing and voice box health in people with neurodegenerative diseases like Parkinson's, Multiple System Atrophy, and Motor Neuron Disease. Researchers will look at the results of routine examinations, including flexible endoscopes that check swallowing, and sometimes muscle tests for the throat. They will also collect general health information and ask people to fill out questionnaires about their swallowing difficulties and how these affect their quality of life. The main goal is to understand more about these problems, which are often overlooked but can be very serious. This information could help doctors identify these issues sooner and potentially lead to better treatments in the future.
At a glance
What is this study about?
Many conditions that affect the nervous system, like Parkinson's disease, Multiple System Atrophy (MSA), and Motor Neuron Disease, can cause problems with swallowing and the voice box. These issues can lead to complications such as dehydration, poor nutrition, and lung infections. In fact, these swallowing problems are often a main cause of serious health issues and even death in people with these conditions. Despite how serious they are, these problems are not always fully understood or checked for.
This study aims to get a clearer picture of how these swallowing and voice box problems affect people with various neurodegenerative diseases. It's an observational study, meaning researchers won't be giving new treatments or asking you to do anything extra. Instead, they will be looking at information from regular medical check-ups you'd already be having. This includes a special camera test (called a flexible endoscopic evaluation of swallowing, or FEES) that looks at your throat while you swallow different things, and sometimes muscle tests of the throat.
By gathering this information, along with some questionnaires about your experiences, the researchers hope to identify specific patterns related to these swallowing and voice box issues. This could help doctors spot these problems earlier in people with neurodegenerative diseases, especially in conditions like MSA where early diagnosis can be tricky. Finding these issues sooner could open the door to earlier treatments and potentially improve quality of life and health outcomes.
Key takeaways
- This study collects information about swallowing and voice problems in brain conditions.
- It uses medical records and questionnaires, not new tests or treatments.
- The goal is to help doctors understand and diagnose these issues earlier.
- Participation is voluntary and won't affect your regular medical care.
- Data from the study could lead to better care for people with neurodegenerative diseases.
Who may be eligible?
You could be part of this study if you have been diagnosed with certain neurological conditions. These include Multiple System Atrophy (MSA), Parkinson's disease, Progressive Supranuclear Palsy (PSP), Motor Neuron Disease, or other neurodegenerative diseases. Your diagnosis needs to meet specific medical guidelines.
In addition to your diagnosis, you must have undergone a specific type of throat and swallowing examination called a systematic task protocol using FEES (Flexible Endoscopic Evaluation of Swallowing). This is a routine test where a thin, flexible tube with a camera is used to look at your throat while you swallow.
It's important to know that you won't be able to join the study if you do not agree to participate and sign a consent form. All participants must be 18 years old or older. The study welcomes both men and women.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Do I have a diagnosis of Multiple System Atrophy, Parkinson's disease, Progressive Supranuclear Palsy, Motor Neuron Disease, or another neurodegenerative disease?
- Have I had a swallowing test using a flexible camera (FEES) as part of my care?
- Am I 18 years old or older?
- Am I willing to sign a consent form to allow my information to be used?
What does participation involve?
Taking part in this study is quite straightforward because it's an 'observational' study. This means you won't be given any new medications or treatments or asked to have extra appointments. Instead, researchers will be looking at information gathered during medical appointments you would already be having as part of your normal care. Specifically, they will review the results from a routine throat and swallowing examination using a flexible camera (called a FEES). If available, they might also look at results from a muscle test of your throat (called an EMG).
You will also be asked to complete two questionnaires. These will ask about your swallowing difficulties (Swallowing Disturbance Questionnaire) and how these issues affect your daily life and well-being (Quality of Life Questionnaire). There are no required follow-up visits specifically for this study. The total duration of your involvement will be limited to the collection and review of this existing information and the completion of the questionnaires.
Potential risks and benefits
Locations (16)
- Department of Neurology and Department of ENT, Medical University InnsbruckVerified postcodeInnsbruck, Austria· Recruiting
- Department of Neurology, Medical University of UlmVerified postcodeUlm, Germany· Recruiting
- Movement Disorders Hospital - Kliniken BeelitzVerified postcodeBeelitz-Heilstätten, Germany· Recruiting
- Department of Neurology, Medical School HannoverVerified postcodeHanover, Germany· Recruiting
- Department of Neurology, University Hospital MünsterVerified postcodeMünster, Germany· Recruiting
- Department of Neurology, University Hospital Carl Gustav CarusVerified postcodeDresden, Germany· Recruiting
- Department of Neueology Asklepios Klinik StadtrodaVerified postcodeStadtroda, Germany· Recruiting
- Asklepios Fachklinikum StadtrodaVerified postcodeStadtroda, Germany· Recruiting
- Asklepios Klinik BarmbekVerified postcodeHamburg, Germany· Recruiting
- Department of Neurology Asklepios Klinik BarmbekVerified postcodeHamburg, Germany· Recruiting
- Department of Neurology, Movement Disorders Unit, Medical Center Tel AvivVerified postcodeTel Aviv, Israel· Recruiting
- IRCCS Istituto delle Scienze Neurologiche, Azienda USL di BolognaVerified postcodeBologna, Italy· Recruiting
Common questions
What is a neurodegenerative disease?
These are conditions where cells in the brain or nervous system gradually stop working over time, such as Parkinson's or Motor Neuron Disease.
What is a FEES test?
FEES stands for Flexible Endoscopic Evaluation of Swallowing. It's a standard test where a doctor or nurse uses a thin, flexible camera to look at your throat while you swallow different foods or liquids.
Will I receive any new treatment?
No, this study does not involve any new treatments or medicines. It only collects information from tests you've already had or would be having as part of your usual care.
Why is this information important?
The information collected can help doctors understand swallowing problems better, potentially leading to earlier diagnosis and improved care for people with these conditions in the future.
Do I have to participate?
No, participating is always your choice. You can decide not to join, or you can withdraw at any time without it affecting your medical care.
How to find out more
Florin Gandor, MD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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