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Information for Health Professionals

Research in the field of extracranial carotid artery aneurysms

International registry of patients with extracranial carotid artery aneurysms


Centralization of care will be a key point in medicine in the future. Creating expertise centers and collective patient data sharing are ways to improve quality of care, especially for medical disorders presenting with a low incidence. On this website you will find information of the Carotid Aneurysm Registry (CAR) in which data of patients with an extracranial carotid artery aneurysm (ECAA) is collected ongoingly. Collected information will be used to address diagnostic and therapeutic research questions. The goal of this registration is to provide high-quality medical care throughout the Netherlands and internationally.

Relevant information, and research results obtained from this database are published on this website. Our multidisciplinary team, with extensive experience in cerebrovascular disease, is also available for questions about the optimal choice of treatment in specific patients. It is important to note that the patient can referred to the University Medical Center Utrecht, but this is not a requirement. Our expert team can conduct further diagnostic assessments and identify treatment options. After the referral, we provide detailed evidence-based advice.

Purpose of the Carotid Aneurysm Registry (CAR)

The main goal of this registry is to collect and share knowledge obtained from clinical and imaging data of patients with ECAA. Patients can be registered regardless of symptoms or treatment choice. We emphasize it is not necessary to refer the patient to our center to be included in the registry. Futhermore, patients that are treated conservatively are also eligible for inclusion.

Future research goals are e.g. the incidence of ECAA, diagnostic options, and defining the optimal treatment for individual patients. 

Inclusion- and exclusioncriteria
Inclusion criteria

  • Patients aged 18 years and older

  • Patients diagnosed with an ECAA (150% dilatation of the normal diameter of the vessel, or any saccular aneurysm)

  • Any etiology

  • Any treatment strategy

  • Patients who only receive medication or are followed up in time can also be included

  • Any participating patient needs to sign the informed consent, please contact info@carotidaneurysmregistry.com


Exclusion criteria

  • Legally incapable patients

Do you want to contribute to this study?

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Register eligible patients

Please register eligible patients with an extracranial carotid artery aneurysm (ECAA) by sending an e-mail to info@carotidaneurysmregistry.com

All patients participating the CAR need to sign the informed consent form. 

Data platform Castor

Research data will be collected from now on by use of the data platform Castor (https://data.castoredc.com/). All research data from the old platform, are now being transferred to the new Castor platform. 

You can request a personal invitation for the Castor data platform of the Carotid Aneurysm Registry, by sending an e-mail to carotidaneurysmregistry@gmail.com.

Imaging data

Both available clinical and imaging data is collected in the registry. If you have available imaging data of included patients, please contact the research team by e-mail.

Medical Ethics Committee Assessment

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METC Utrecht

In order to fulfill the current privacy legislation, we have updated the registry protocol last year. The updated protocol of the Carotid Aneurysm Registry was approved by the Medical Ethics Committee (METC) Utrecht (dated 11-04-2019). 

Local METC Assessment

Medical Ethics assessment differs per center. An assessment by your local medical ethics committee may be mandatory beforehand you can register eligible patients. 

All research data will be collected from now on by the GPC proved data platform of Castor (https://data.castoredc.com/). 
Please contact info@carotisaneurysma.nl for your personal invitation to the secured Carotid Aneurysm Registry data platform. 

The online data platform is a secured online service and data will be archived offline. All participating patients need to sign the informed consent. 

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