OXYTAHANE - Oxygen therapy: Acute Treatment for paroxysmal dystonic or plegic attacks in alternating hemiplegia of childhood
The OXYTAHANE study is exploring if providing extra oxygen (oxygen therapy) can help children and young people who experience sudden attacks of weakness or unusual movements, known as paroxysmal dystonic or plegic attacks, as part of Alternating Hemiplegia of Childhood (AHC). AHC is a rare and complex neurological condition. This study is in an early phase (Phase II), meaning it's one of the first human trials to look closely at how well and how safely oxygen might work for these specific attacks. Researchers will be observing whether giving oxygen helps stop these episodes within 30 minutes of them starting, over a period of five weeks. This research is important because it could lead to a new way to manage these challenging symptoms for people living with AHC.
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¿De qué trata este estudio?
Alternating Hemiplegia of Childhood (AHC) is a very rare and complex condition that starts in childhood. One of the main challenges for people with AHC is experiencing sudden, temporary attacks where parts of their body might become weak or paralysed, or they might have uncontrolled, jerky movements. These episodes, sometimes called 'attacks,' can be very distressing and unpredictable.
This study, called OXYTAHANE, is looking into whether giving extra oxygen through a mask or nasal tubes could help stop these attacks quickly once they start. Think of it like giving someone a boost of fresh air when they're feeling faint. The researchers want to see if this simple treatment can make a real difference in how long and how severe these attacks are, helping children and young people with AHC get back to feeling better sooner.
This is an early-stage study, called a Phase II trial, which means it’s one of the first times this idea is being tested carefully in people. The main goal is to see how many of these attacks can be brought under control within 30 minutes of starting the oxygen. If the results are promising, it could open the door to a new and straightforward way to help manage some of the most difficult symptoms of AHC in the future.
Puntos clave
- Exploring if oxygen can quickly stop AHC attacks.
- Specifically focuses on sudden weakness or unusual movements.
- An early-stage study to understand effectiveness.
- Participation involves using oxygen during attacks for 5 weeks.
- A potential new way to manage AHC symptoms.
- Open to individuals with AHC aged 18 and over.
¿Quién puede ser elegible?
This study is open to both men and women. To be considered, you must be 18 years old or older. There is no upper age limit for taking part.
The research team will need to check your full medical history and current health to make sure the study would be safe and suitable for you. They will explain specific details that might make you eligible or not.
It’s important that your doctor agrees for you to take part and believes it’s appropriate for your situation. The study is specifically for individuals diagnosed with Alternating Hemiplegia of Childhood.
¿Podría este estudio ser adecuado para ti?
Responde estas preguntas rápidas para ver si puedes ser elegible. Esto es solo una guía: el equipo de investigación toma la decisión final.
- ¿Tienes 18 años o más?
- Do you have a diagnosis of Alternating Hemiplegia of Childhood (AHC)?
- Are you able to use a small oxygen device at home?
- Can you or a caregiver help record information about your attacks?
- Is your doctor able to support your participation?
¿En qué consiste la participación?
If you decide to take part in this study, you will be given a small bottle of medical oxygen to use at home. When you start to experience an attack (a motor symptom), you will be asked to begin using the oxygen. The main part of the study involves tracking how quickly your attacks respond to the oxygen over a period of five weeks.
You will need to regularly record details about your attacks and when you use the oxygen. This might involve keeping a diary or using a special app. There will likely be regular check-ins, either in person or by phone/video call, to see how you are doing and to collect the information you've recorded. The full duration of your participation, including follow-up, will be explained by the study team, but the main observation period for the oxygen's effect on attacks is five weeks.
Riesgos y beneficios potenciales
Ubicaciones (1)
- —No verificadoFrancia
Preguntas comunes
What is Alternating Hemiplegia of Childhood (AHC)?
AHC is a rare childhood condition causing repeated, temporary episodes of weakness or paralysis, often on different sides of the body, and other movement issues.
What are 'motor attacks'?
These are the sudden, temporary episodes of weakness, paralysis (when you can't move a body part), or uncontrolled movements that people with AHC can experience.
What does 'oxygen therapy' mean in this study?
It means giving extra oxygen through a mask or small tubes placed in your nose, when an attack starts, to see if it helps stop or lessen the attack.
¿Cuánto tiempo estaré involucrado en el estudio?
The main part of the study where researchers observe the oxygen's effects on attacks is over five weeks. The total length of your involvement, including setup and follow-up, will be discussed by the study team.
Will I still get my usual treatment for AHC?
Yes, unless the study team specifically advises otherwise, you should continue with your regular AHC treatments while participating in this study.
Cómo obtener más información
Siempre hable con su médico de cabecera o especialista antes de decidir participar en un estudio.
¿Interesado en participar?
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Impulsado por nuestro foro en community.patient.info. Por favor, sea respetuoso — esto no es un consejo médico.