“Improving vascular health for the public benefit”
Join forces with ESVS members, including surgeons, medical manufacturers, and authorities, to reach the ultimate goal of improving patient outcomes and advancing treatment for venous diseases.
WHAT IS EVeR?
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.
A project from
The European Society for Vascular Surgery (ESVS)
A non-profit organisation of over 3,000 vascular surgeons and specialists from Europe and beyond. Its goals focus on training, education, and advancing science in vascular care. ESVS operates as an independent, European platform with expertise from renowned venous specialists.
Our Mission is to enhance patient lives by improving deep venous disease treatments
The registry helps us to gather and coordinate data on vascular health, which can inform research, care and new treatments.
How can you get involved?
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?
Your data helps us build the registry, which helps patients in three main ways:
Improve 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.
This podcast, featuring Prof. Robert Hinchliffe and Prof. Stephen Black, provides additional insights into the EVeR registry.
Frequently Asked Questions by Patients
What is EVeR Registry?
European Venous Registry (EVeR) is a database designed to collect and analyse data from participating centres to improve clinical outcomes and research related to Deep Vein Thrombosis (DVT).
Why Am I Invited to Join?
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 improve the understanding and treatment of deep venous disease, benefiting future patients and advancing medical research.
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.
What am I being asked to do?
If you choose to participate in the EVeR Registry, you are agreeing to allow your treating physician to record relevant medical information about your diagnosis, treatment, and follow-up care in a secure database.
What you will do:
- Allow your treating physician to securely record details of your condition and treatment by signing a consent form.
- Continue receiving your usual care no extra tests, procedures, or visits.
What will NOT happen:
- No changes will be made to your treatment plan.
- No experimental treatments will be given.
- No commercial company will contact you or access your personal data that could identify you.
Will I receive any reimbursement for participating?
No, 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.
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.
What is Pseudonymization?
Your data will be pseudonymised before it is stored in the EVeR registry. This means that your personal identifiers, such as your name and date of birth, will be replaced with a unique code. This process helps protect your privacy by ensuring that your medical data cannot be directly linked to you without additional information, which is kept separately and securely.
Why is Consent required?
Your consent is needed to allow your treating physician to register your data in the EVeR registry. Without your consent, your personal data will not be transferred, processed, or evaluated within the registry.
Participation is entirely voluntary, and if you choose to withdraw your consent at any time, the EVeR registry will immediately stop processing your data.
Your decision to give or withhold consent will not affect your current or future care in any way. Your treatment and medical care will remain unchanged, regardless of whether you choose to participate in the registry.
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 pseudonymization (removing identifying details and replacing them with a unique code), 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 General Data Protection Regulation (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.
What are my rights and how can I exercise them?
How is my data secured?
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.
Where will the data be stored?
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, such as your name and date of birth, 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.
I don’t want my data to be collected anymore. What will happen?
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:
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No new data about you will be collected or added to the registry.
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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.
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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 If There Is a Problem?
If you experience any issues related to your participation in the EVeR registry, or if you believe there has been a breach of your personal data, you have the right to raise your concerns. Your data is handled with strict confidentiality, but in the rare case of a breach, appropriate measures will be taken to address the issue and protect your rights.
If you have any concerns or complaints, you may contact your physician, hospital, or, where available, the Patient Advice and Liaison Service (PALS). PALS offers confidential advice, support, and information on health-related matters, serving as a point of contact for patients, their families, and their caregivers.
Alternatively, for any inquiries regarding data privacy and security, you may contact the Data Protection Officer at the email address provided below.
More details
See also the Patient information sheet which explains the study’s purpose, potential risks and benefits, confidentiality measures, and the patient’s rights, including the option to withdraw at any time.
More questions? Do not hesitate to contact our team.
- For Data Privacy questions or to exercise your rights
- General questions about the Registry
