Improving Vascular Health for Public Benefit
The ESVS has taken the following initiatives to ensure patients have access to high-quality information.
1. European Venous Registry
How can patients help improve the European Venous Registry?
The registry is like a notebook where doctors record each patient’s diagnosis, treatment, any medical devices used, and outcomes. Pseudonymised data from it can then help doctors, researchers, and medical companies compare treatments and devices to assess effectiveness.
Your doctor may ask to include your health data in the registry. You will be given all the necessary information you need to make a decision, including details on how your information will be used. Fuller details and contacts for information are available at the bottom of the page
How Does Your Data Help?
The registry helps us to gather and coordinate data on vascular health, which can inform research, care and new treatments.
Enhance Outcomes For Patients
Help other patients benefit from improved treatments and the identification of trends in medical practice.
Improve Care Quality And How It Is Monitored
Assist healthcare providers, researchers, and manufacturers in monitoring and enhancing the quality of care delivered.
Build The Evidence Base For Change
Tackle existing challenge due to the lack of robust data on deep venous diseases.
Get Familiarised With The Registry And Its Mission
Take a look at this leaflet for a quick introduction to the initiative.
Equip Yourself With Knowledge
The patient information sheet below explains the study’s purpose, potential risks and benefits, confidentiality measures, and the patient’s rights, including the option to withdraw at any time.
Reach Out
More questions? Do not hesitate to contact our team.
- For data privacy questions or to exercise your rights.
- General questions about the Registry
Frequently Asked Questions
FAQ
What am I being asked to do?
You are invited to participate in the European Venous Registry (EVeR) project because you have been diagnosed with acute or chronic lower limb deep venous disease, confirmed through imaging. This includes:
- Deep venous disease affecting the iliac and/or common femoral veins, with or without extension to the inferior vena cava (IVC).
- A new, imaging-confirmed diagnosis involving the IVC only.
Your participation will help us improve the understanding and treatment of deep venous disease.
What are the inclusion criteria for EVeR?
All patients aged 18 and over with iliofemoral deep venous (DV) disease, whether acute or chronic, are eligible for inclusion in EVeR.
This includes patients who:
- Receive thrombectomy, venous stenting, or other interventions.
- Do not undergo any intervention but have confirmed iliofemoral deep venous disease.
- Have an imaging-confirmed new diagnosis involving the iliac and/or common femoral veins, with or without extension to the inferior vena cava (IVC).
- Are able to provide informed consent for registry participation.
Will I receive any reimbursement for participating?
Participants will not receive reimbursement for taking part in this study. Participation is entirely voluntary, and there are no direct financial costs or expenses expected for participants. The purpose of the study is to contribute to medical research and improve healthcare for future patients, rather than to provide compensation for involvement.
Why is consent important?
By participating in the EVeR Registry, you agree to allow your treating physician to record relevant medical information about your diagnosis, treatment, and follow-up care in a secure database.
You will continue receiving your usual care without extra tests, procedures, visits, or experimental treatments.
Commercial companies will not contact you or access personal data that could identify you.
Participation is entirely voluntary. You are allowed to withdraw your consent at any time, in which case, the EVeR registry will immediately stop processing your data.
Your treatment and medical care will remain unchanged, regardless of your participation status.
How is my data secured and where is it stored?
Your data is encrypted during transfer and securely stored in compliance with data protection laws, including GDPR. All personnel with access to your data are trained in confidentiality and data protection protocols. The registry provider follows industry best practices for information security and implements physical and procedural safeguards to protect your data. Additionally, the provider mandates annual data protection training for its staff, ensuring they fully understand the importance of maintaining patient confidentiality.
Although the registry is developed and maintained by Dendrite, a UK-based company, all data is securely hosted at OVHcloud’s data centres located in Roubaix, France, within the European Union.
Who can access my data and will they know who I am?
Your data in the European Venous Registry is pseudonymised. This means that personal identifiers (name, date of birth, etc.) are replaced by a unique code. The key that links this code to your identity is kept securely and separately, so people working with your data cannot identify you directly.
Only authorised individuals, such as your treating physician, approved hospital staff, registry administrators, and researchers can access this pseudonymised information. In some cases, approved research centres, device manufacturers (for quality and regulatory purposes), or regulatory bodies may also access registry data, but only in a pseudonymised format.
Everyone with access to registry data must follow strict data protection laws, including the General Data Protection Regulation (GDPR). This ensures that your privacy is protected and your data is handled securely and ethically at all times.
Are there any risks to participating?
Participating in the EVeR registry involves minimal risk, as it is an observational study that collects information about standard treatments related to your diagnosis, treatment, and follow-up care. The registry does not influence or alter your treatment in any way. However, there are a few potential risks to consider:
- Privacy and Data Security Risks: While your personal information is protected through strict data security measures and pseudonymisation, there is always a small risk of data breaches. In the unlikely event of a breach, appropriate steps will be taken to protect your information and notify you if necessary.
- Data Sharing Outside the EU: During this study, pseudonymised and aggregated data will be shared with study centres outside of the EU, which may not be subject to the same data protection regulations as those in the EU under the GDPR. Not all these countries provide an equally high level of data protection, and there is a possible risk that your GDPR-guaranteed rights may not be enforceable in those regions. However, all participating study sites are required to protect your data according to strict ethical and security standards. Your name and identity will never be shared outside of your treating hospital. By participating in this study, you agree that your data may be shared with study centres outside the EU.
- Potential for Re-contact: As part of the study, your treating physician or the research team may re-contact you for follow-up assessments. This is to gather additional information about your health status and treatment outcomes over time. If you agree to follow-up contact, you will be informed about the purpose and frequency of these communications. You are free to decline follow-up participation at any time, without any impact on your current or future medical care.
I don't want my data to be collected anymore. What will happen?
Although the registry is developed and maintained by Dendrite, a UK-based company, all data is securely hosted at OVHcloud’s data centres located in Roubaix, France, within the European Union.
What if there is a problem?
Your participation in the European Venous Registry (EVeR) is entirely voluntary. If you decide you no longer want your data to be collected, you can withdraw at any time without affecting your current or future medical care.
When you withdraw:
No new data about you will be collected or added to the registry.
Any data already collected before your withdrawal will remain in the registry, as it forms part of research analyses already in progress and helps maintain data accuracy. However, it will continue to be stored in a secure, pseudonymised format, meaning no one can identify you directly from it.
Your decision will not impact your treatment or relationship with your doctors.
If you wish to withdraw, simply inform your treating physician or contact the registry team at EVeR.patientprivacy@mydatatrust.info.
What data is collected?
With your explicit consent, the hospital can register all relevant medical data on your treat- ment.
Personal data: Your hospital ID, year of birth, and gender will be collected by your hospital to securely identify your records. These details will be held along with your medical data to ensure accurate record-keeping and data integrity.
Medical data: Information about your diagnosis, treatment, and follow-up visits, including data related to any procedures, rehabilitation, or outcomes.
2. Information for Patient in Clinical Practice Guidelines
All recent ESVS Guidelines have an ‘information for patients’ section to make recommendations accessible to all.
Select the language you need and then click on the download button.
3. Additional Resources
UK Circular Foundation
English – Find easily understandable information regarding a variety of vascular diseases.
Patient Brochures from the SSVS and SSVN
Swedish – The Swedish Society for Vascular Surgery and Swedish Society of Vascular Nursing have provided a number of informational pamphlets for patients.
Podcast Episode from Haukeland University Hospital
Norwegian – Find the ‘Karpodden’ Podcast from the Department of Vascular Surgery and the Communication Department at Haukeland University Hospital, Norway .
'Think Aorta' Podcast
English – Think Aorta campaign aims to raise awareness and improve the diagnosis of aortic dissection worldwide.
