Carotid Aneurysm Registry

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International registry of patients with extracranial carotid artery aneurysms

Centralization of care will be a key point in medicine in the future. Creating specialized 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 an online registry where for data collection of patients with an extracranial carotid artery aneurysm (ECAA). This database will be used to address diagnostic and therapeutic research questions. The goal of this study is to provide high-quality medical care throughout the Netherlands and internationally.

Inclusion of patients will be through our website, and on this website, patients and physicians can find relevant information about ECAA. Publications and information gained through this study will also be available on the 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 (UMCU), 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.

The primary goal of the registry, however, is to collect and share patient-related information on patients presenting with ECAA, 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. Furthermore, patients who only receive medication or are followed up in time can be included in our registry. For more information on inclusion criteria please Click here.

Do you want to contribute to this study?

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In this registry, we collect data on patient and aneurysm characteristics, symptoms, and selected treatment. Follow-up is categorized as short-term (<30 days) and long-term (>30 days). The frequency of follow-up is not defined; thus, you can set the frequency to your own preference.

You will need the following details (when available) to register a patient:

  • Personal details of the patient
  • Clinical details of the patient during intake
  • Imaging (we also request you upload any relevant imaging, this is possible through a digital file or CDROM)

Click here for the detailed case report file.

You can contact us by telephone or email for a consultation with our multidisciplinary expert team or to refer a patient to our center.

Privacy and informed consent

The study protocol was reviewed by the UMCU Medical Ethical Research Committee (Medisch ethische toetsingscommissie). This committee confirmed the study is not subject to the Medical Research Involving Human Subjects Act (WMO) and has provided written consent stating there are no objections to the performance of this study. All patient data will be treated confidentially. This online registry is a secured environment, and data will be saved offline. All patients need to provide a written informed consent before registration.

Inclusion and exclusion criteria

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


Exclusion criteria:

  • There are no exclusion criteria


Goal of this study

Collected data will be used for observational research. Through this study, we wish to gain knowledge about the incidence of ECAA, diagnostic assessments, treatment indication, and treatment outcome.

 

Register:

To open your free account, please register here. Fill in this registration form and click on the register button. You will receive an email with your username and generated password.

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