RecruitingOBSERVATIONAL

Neurofrailty: A Study of Late-onset Epilepsy and Its Associations

The NeuroFrailty study is for adults who have their first seizure later in life, sometimes called Late-Onset Epilepsy. We don't know much about why these seizures happen or if they're connected to other health issues. Some people wonder if these seizures might be an early sign that problems like stroke or dementia could develop later. This study will carefully watch the 'brain health' of people with late-onset seizures over several years. We'll look at things like blood tests, brain scans, and memory, and compare them to people without seizures. The goal is to understand if there's a real connection between late-onset seizures and conditions like stroke or dementia, as currently, there's not enough research to say for sure.

At a glance

Status

Recruiting

Sponsor

Lancashire Teaching Hospitals NHS Foundation Trust

Enrolment target

360

Start

05 May 2022

Estimated completion

12 Jan 2027

Late Onset Epilepsy Stroke Dementia

What is this study about?

Imagine your body sometimes gives you a little warning sign, like a new type of headache. For some adults, having their very first seizure later in life might be one of those warning signs. Scientists don't fully understand why some people start having seizures as adults, and they're especially curious if there's a link between these seizures and other health conditions that might show up years down the line, like a stroke or problems with memory (which doctors call dementia).

This study, called NeuroFrailty, aims to explore these questions. We're going to carefully follow people who have experienced their first seizure as an adult. We'll look at various aspects of their 'brain health' over many years, including things like blood pressure, blood tests, and brain scans. We will also look at how their memory changes and if they develop any new health conditions or changes in their lifestyle. By doing this, we hope to build a much clearer picture of what happens after someone has their first adult seizure.

It's important to know that this is an 'observational study'. This means that if you take part, your medical care for your seizures will remain exactly the same as it would be if you weren't in the study. We won't be trying out new treatments or asking you to change your medications. Instead, we'll simply be gathering information over time to learn more. Because there's so little research in this area, your participation could be incredibly valuable in helping us understand how to better support people with late-onset seizures in the future.

Key takeaways

This study investigates adult first seizures and possible links to stroke or dementia.
It's an 'observational study', so your seizure treatment won't change.
You can choose how much you want to be involved, from record checks to more detailed assessments.
Participation helps scientists understand late-onset seizures for future patients.
Your health information will be monitored over several years.
You can leave the study at any time without affecting your care.

Who may be eligible?

The NeuroFrailty study is looking for adults aged 18 or over who have recently had their first seizure.

To join as a 'case participant' (someone who has had a seizure), you need to have been diagnosed with your first seizure or late-onset epilepsy by a specialist doctor at a neurology centre. We won't be able to include people whose seizures are clearly caused by a serious event like a brain tumour, or a major stroke (though a mini-stroke, called a TIA, might be okay), a serious head injury, or a problem you were born with.

We are also looking for 'control participants' who have migraine headaches but no history of seizures. These control participants help us compare information. If you have epilepsy or have had a seizure, you cannot be a control participant. We also can't include control participants whose migraines are caused by the serious events mentioned above.

Quick self-check

Are you 18 years old or older?
Have you had your first seizure as an adult (after age 18)?
Has a specialist doctor diagnosed your first seizure or late-onset epilepsy?
Are your seizures NOT caused by a brain tumour, major stroke, serious head injury, or a problem you were born with?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part, you can choose how involved you'd like to be. This is an observational study, which means we won't change your usual medical care or ask you to take new medicines. We'll be following you for several years.

1. **Low Involvement:** A researcher will check your hospital and GP records once or twice a year. They'll look at specific things like your current medications, any new diagnoses you've received, results from tests related to stroke risk (like cholesterol, blood pressure, or heart traces), and any brain scans you've had.

2. **High Involvement:** (The provided text only gives an incomplete description of 'High involvement'. Assuming it would involve more direct contact.) This level likely involves more in-depth assessments, potentially including regular appointments where you might have more detailed memory tests, provide information about your lifestyle (like exercise habits, driving, or family planning), or have further discussions about how you're feeling and any changes you've noticed. The study will look at how things change over several years, such as your memory, new diagnoses, medication adjustments, and changes in your daily life.

Potential risks and benefits

Taking part in this study could help us learn much more about late-onset seizures, which could benefit future patients. There are very few direct risks to you as this is an observational study – we are not changing your medical care. The main 'risk' would be the time you commit, especially if you choose high involvement. Your personal information will be kept confidential. Remember, your participation is completely voluntary; you can change your mind and stop being part of the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Lancashire Teaching Hospitals NHS
Preston, United Kingdom· Recruiting

Common questions

What does 'late-onset epilepsy' mean?

It means having your very first seizure as an adult, typically after the age of 18.

Will taking part in this study change my seizure treatment?

No, this is an observational study. Your doctor will continue to manage your seizures as they normally would, completely separate from the study.

What will researchers look at in my records?

They will look at specific things like your medicines, any new health problems, test results related to stroke risk, and brain scans.

Could taking part help me personally?

While it's unlikely to directly change your current treatment, your information will be key to understanding late-onset seizures, which could lead to better support and knowledge for people like you in the future.

What if I decide I don't want to be in the study anymore?

You are free to withdraw from the study at any time, without giving a reason, and it will not affect your medical care.

How to find out more

Jasmine Wall, MB BChir

jasmine.wall@lthtr.nhs.uk via switchboard Official trial record

Always speak to your GP or specialist before deciding to take part in a study.