RecruitingOBSERVATIONAL

@neurIST : Intregrated Biomedical Informatics for the Management of Cerebral Aneurysms

This study, called @neurIST, is building a special database to learn more about brain aneurysms. These are weak spots in blood vessels in your brain that can bulge or burst. Researchers are collecting detailed information, including medical history, scans, and biological samples, from people with aneurysms and healthy volunteers. The goal is to identify factors that might cause aneurysms to form or burst, and to see which treatments (like surgery or observation) work best. The overall aim is to improve how doctors manage brain aneurysms, make care more personal, and potentially lead to new discoveries and treatments. Participating means contributing anonymous information to this important research.

At a glance

Status

Recruiting

Sponsor

University Hospital, Geneva

Enrolment target

20,000

Start

01 Jun 2015

Estimated completion

01 Mar 2040

Intracranial Aneurysm

What is this study about?

Imagine a big, secure library filled with medical information all about brain aneurysms. That's essentially what the @neurIST study is trying to create, specifically for a condition called an 'intracranial aneurysm' – which is a weak, bulging spot in a blood vessel in the brain. The scientists want to gather as much detail as possible from many different people, including those with aneurysms and healthy volunteers, to build a complete picture.

The main idea is to use this huge collection of information to answer some very important questions. For example, they want to find out what causes these aneurysms to form, why some might burst, and what generally makes them behave the way they do. This includes looking at things like genetics, lifestyle factors, and even the exact shape of the aneurysm. They also want to compare different ways doctors currently treat aneurysms – from just watching them to performing surgery – to see which approaches lead to the best results for patients.

Ultimately, this database will help doctors make more informed and tailored decisions for each patient. By understanding the condition better, they hope to improve patient care, make treatments more effective, and potentially discover new ways to prevent or treat aneurysms in the future. Your contribution helps build this vital knowledge base for everyone affected by this condition.

Key takeaways

This study is creating a large, anonymous database about brain aneurysms.
It aims to understand why aneurysms form and which treatments work best.
Participation involves sharing existing medical information and scans; no new procedures.
Your identity will be protected; data is anonymous.
You can withdraw from the study at any time without impacting your medical care.
The research helps improve care for future patients with brain aneurysms.

Who may be eligible?

To take part in this study, you generally need to be at least 18 years old. If you're a patient, you must have a brain aneurysm that has been clearly identified through special scans like an MRA, CTA, or DSA. If you've had a brain bleed (called a subarachnoid haemorrhage) from an aneurysm, that also needs to be confirmed by a CT scan or a spinal tap.

They are also looking for healthy volunteers. This could be someone who responds to an invitation, a person randomly chosen from a general population, or even family members of people with aneurysms who don't have the condition themselves. They're trying to understand the differences between these groups.

The most important thing is that you or someone who can legally make decisions for you must be able to understand the study and agree to participate. If you're unable to provide the necessary medical information or simply do not wish to take part after hearing about it, then this study wouldn't be suitable for you.

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.

Are you 18 years old or older?
If you're a patient, do you have a confirmed brain aneurysm?
Are you able to understand and agree to participate (or can someone legally agree for you)?
Are you willing to let researchers use your anonymous medical information?
If you have an aneurysm, was it diagnosed by MRA, CTA, or DSA scans?

Answer every question to see your result.

What does participation involve?

This study does not involve new treatments or medicines. Instead, it's about collecting existing information. If you participate, doctors will gather details about your medical history, any brain scans you've had, and potentially biological samples (like blood or tissue) that you’ve already given for other medical reasons. This information will then be added to the secure database.

There are no special visits required just for this study beyond your usual medical appointments. You won't be asked to change any part of your current treatment or care. Your contribution primarily involves agreeing that your de-identified medical information can be used for this important research. There isn't a specific total duration for your participation, as it ongoing data collection; however, the impact of your individual data collection is limited to providing the existing information.

Potential risks and benefits

There are no direct medical risks from participating in this study, as it only involves collecting information that already exists or would be collected during your standard care. You will not receive any experimental treatments or procedures. The main benefit is that your anonymous information will help researchers understand brain aneurysms better, potentially leading to improved care for future patients and new medical discoveries. You have the right to withdraw your consent at any time without giving a reason, and this decision will not affect your future medical care in any way. Any information you've already provided would then no longer be used for the study.

Locations (22)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of California
Verified postcode
San Francisco, United States· Recruiting
University of Cincinnati College of Medicine
Verified postcode
Cincinnati, United States· Recruiting
University of Virginia
Verified postcode
Virginia Beach, United States· Recruiting
Montreal Neurological Institute and Hospital, McGill University
Verified postcode
Montreal, Canada· Recruiting
Helsinki University Central Hospital
Verified postcode
Helsinki, Finland· Recruiting
Kuopio University Hospital
Verified postcode
Kuopio, Finland· Recruiting
ICAN
Verified postcode
Nantes, France· Recruiting
Department of Neurosurgery, Klinikum rechts der Isar, Technical University Munich
Verified postcode
Munich, Germany· Recruiting
University of Pecs
Verified postcode
Pécs, Hungary· Completed
Erasmus Medical Center
Verified postcode
Rotterdam, Netherlands· Completed
University Medical Center Utrecht
Verified postcode
Utrecht, Netherlands· Recruiting
Jagiellonian University Medical College
Verified postcode
Krakow, Poland· Recruiting

Common questions

What is an intracranial aneurysm?

It's a weak, bulging spot in a blood vessel in your brain, kind of like a tiny balloon.

Will I receive any new treatment if I join this study?

No, this study is about collecting information, not trying new treatments. Your medical care will stay the same.

Is my personal information safe and private?

Yes, all your information will be kept strictly confidential and used in a way that doesn't identify you personally.

Can I leave the study at any time?

Absolutely, you can withdraw at any point without needing to explain why, and it won't affect your medical care.

What is the main goal of this study?

The goal is to build a large database of information to help doctors better understand brain aneurysms and improve how they are treated in the future.

How to find out more

Sven Hirsch, Dr

hirc@zhaw.ch +41 58 934 54 44 Official trial record

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