BSIR Venous Registry
The current National Institute for Health and Care Excellence (NICE) guidance on percutaneous mechanical thrombectomy for acute deep vein thrombosis (DVT) of the leg (www.nice.org.uk/guidance/ipg651) requires clinicians to enter details of all patients undergoing such intervention on the British Society of Interventional Radiologist (BSIR) Venous Registry.
This Registry is accessible to all clinicians (Interventional Radiologists, Vascular Surgeons and Haematologists) managing patients with acute iliofemoral DVT and aims to collect standardised data on all patients referred for consideration of percutaneous mechanical thrombectomy/thrombolysis in the UK. Furthermore, this Registry will collect data on patients undergoing percutaneous image-guided interventions in symptomatic chronic post-thrombotic and non-thrombotic iliofemoral venous outflow obstruction.
The main objective of the Registry is to improve the quality of care by evaluating the outcomes including the safety of interventions in acute and chronic iliofemoral venous obstruction.
In order to comply with the General Data Protection Regulation (GDPR), patients should be informed and their explicit consent obtained before entry onto the Registry. The Patient Information Leaflet and Consent Form for participation in the BSIR Venous Registry can be found below.
Request User login: To request user login please click here.
Please note when user logins are issued you will receive 2 e-mails.
- Email 1. Subject heading: 'Welcome to CaseCapture' (BSIR Venous Registry host)
- Email 2. Subject heading: 'You have been invited to BSIR Venous Registry on CaseCapture'
If you have already been issued a username and password please login here
Contents |
User Instructions Guide
Patient Information Leaflet
Please click here to download the Patient Information Leaflet
British Society of Interventional Radiology
Venous Registry
Patient Information Leaflet
Why have you received this leaflet?
The hospital involved in your care is participating in a national Registry that has been set up to improve the care of people with acute iliofemoral DVT (blood clot within the veins of the pelvis or upper leg) and chronic iliofemoral venous obstruction (blocked veins as a long-term complication of these blood clots). This document will group these conditions together and refer to them as ‘DVT’ (Deep Venous Thrombosis). The National Institute for Health and Care Excellence (NICE), the organisation that provides national guidance and advice to improve health and social care, recommends that doctors performing treatments for these conditions enter relevant information on this Registry. This leaflet tells you about this Registry.
What is the BSIR Venous Registry?
The BSIR Venous Registry is a clinical audit used to evaluate the safety and effectiveness of treatments for DVT. The more data we can collect, the better our understanding of these conditions and the better treatments we can offer to patients.
NHS hospitals in the UK are participating in the BSIR Venous Registry which is run by the British Society of Interventional Radiologists (BSIR).
What information is collected on me?
The BSIR Venous Registry collects information on the treatments you receive for these complicated DVTs. Only information related to these conditions and treatments is collected and includes information on the severity of your condition, and the types of investigations and treatment you receive. The BSIR Venous Registry does not require you to have any extra appointments or clinical tests. It does not affect the care you receive and it uses only information routinely collected by hospital staff. The Registry does not collect information on any care that does not relate to your DVT.
To help the BSIR Venous Registry provide an in-depth picture of care, the information provided by your specialist is linked to some other national health databases. This will mean keeping details such as your NHS number, date of birth and postcode to enable the databases to be linked. However, these personal details will not be shared with anyone outside the NHS.
What does the BSIR Venous Registry do with my information?
The data held on the Registry will be analysed by clinicians and statisticians who are part of the Registry Team, with the aim of improving the quality of care of people with these conditions. The reports will be available to the public, clinicians, hospital management and the National Institute for Health and Care Excellence.
The BSIR Venous Registry only publishes information describing the care received by groups of similar patients. It does not publish information on individuals and your personal details will not be made public.
Any reports that are published will be available on our website.
Occasionally, national registries are asked to support research to improve treatments. The information in the registry is only used for medical and scientific research after it has been made anonymous. Your personal details will not be passed onto researchers.
How will your information be kept safe?
The Registry has strict data security measures to keep the information held on you confidential. We follow rules about how the data are stored in a secure environment and that it is only made available to appropriate staff. The Registry conforms to the confidentiality rules established by the Data Protection Act 2018, the NHS Act 2006, and the Health and Social Care Act 2008. Your personal data will not be shared with anyone outside the NHS.
Patient Consent
We need your permission participate in the Registry and hold information that can identify you. You will be given a consent form to show whether or not you want the hospital to submit your personal details. Your care will not be affected by whether or not you consent.
If you change your mind and want to withdraw consent, please email [email protected] and put "Request to opt-out of Venous Registry" in the subject line.
Further information
If you would like more information about the BSIR Venous Registry you can email [email protected] or visit the BSIR website https://www.bsir.org/registries/active-registries/bsir-venous-registry/
Version 1.0
BSIR September 2021
BSIR Venous Registry Patient Information Leaflet
Patient Consent Form
Please click here to download the Consent Form.
British Society of Interventional Radiology
Venous Registry
CONSENT FORM for participation in the BSIR Venous Registry
The purpose of the BSIR Venous Registry is to collect information about the care of people with acute iliofemoral deep venous thrombosis (DVT) and chronic iliofemoral venous obstruction in the UK.
Collecting this information will help hospitals to improve the care of patients with acute iliofemoral DVT and chronic iliofemoral venous obstruction.
- I confirm that I have read the information sheet dated August 2021 (version 1.0) for participation in the BSIR Venous Registry. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily.
- I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason, without my medical care or legal rights being affected.
- I give permission for relevant information from my health records to be submitted to the BSIR Venous Registry for analysis and audit.
- I give permission for my BSIR Venous Registry Record to be linked to information held by other central UK NHS bodies.
- I understand that the information collected about me on the BSIR Venous Registry may be used to support other related research in the future and may be shared anonymously with other researchers approved by the BSIR Venous Registry Team.
Patient’s Name …………………………………………………………………………………………………………………………………………
Patient’s Signature …………………………………………………………………………………………….. Date ………………………………..
Staff Member’s name and Role ……………………………………………………………………………………………………………………..
Staff Member’s Signature ………………………………………………………………………………….. Date ………………………………..
For further information about the BSIR Venous Registry, please visit the BSIR website at https://www.bsir.org/venous-registry/
BSIR Venous Registry Consent form
Relaunch
BSIR Venous Registry
Dear BSIR and VS members,
We are pleased to announce that the BSIR venous registry has now been relaunched and it is again possible to enter patient data. This registry is intended to capture data on venous interventions, primarily for the treatment of lower limb DVT.
NICE IPG651 (2019) recommends that the details of all patients undergoing mechanical thrombectomy should be entered into the registry
You will need to request new user access. Links to obtain these are included below and are also available on the BSIR and VS websites. The registry is run by Netsolving via the Casecapture platform
Direct access to the registry
https://data.casecapture.com/
The registry was suspended to resolve and clarify patient consent for data retention. That process has now been completed. Further details are available on the BSIR website. The consent forms and patient information leaflets are available to download from the BSIR, VS and Casecapture websites.
BSIR Registries & Audit committee
Launch
BSIR Venous Registry
Dear Members,
The BSIR Registries & Audit Committee are pleased to announce the launch of the BSIR Venous Registry, which is accessible to all clinicians managing patients with acute iliofemoral DVT and symptomatic chronic iliofemoral venous outflow obstruction (Interventional Radiologists, Vascular Surgeons and Haematologists).
Current NICE guidance recommends Clinicians to enter details of all patients undergoing percutaneous mechanical thrombectomy for acute iliofemoral DVT on this Registry.This Registry will also collect data on patients undergoing percutaneous image-guided interventions in symptomatic chronic post-thrombotic and non-thrombotic iliofemoral venous outflow obstruction.
The main objective of the Registry is to improve quality of care by evaluating outcomes and assessing the safety of interventions in acute and chronic iliofemoral venous obstruction.
To apply for user access please click HERE.
Kind regards
Julie Ellison
BSIR Director of Operations