CADASIL Data Set

The Neurovascular Diseases working group (NEUROVASC-WG) has carefully selected the basic data to be specified for the grouping of cohorts of patients affected by CADASIL.

The choice of the corresponding specific items and their structure have been carefully selected so that they can be integrated into any new patient database within the VASCERN network, a European Reference Network established to gather expertise in Europe to provide accessible cross-border healthcare to patients with rare VAScular diseases across the continent.

These formatted items have been very carefully selected, in particular their format and structure, so that the information they contain can be widely shared in the future and fulfil all the principles of FAIR data (Findable, Accessible, Interoperable, Reusable).

If you choose to use this type of information to share data according to this format, we ask that you include this statement in all publications or presentation(s): “Items used for sharing data across CADASIL cohorts have been chosen by the NEUROVASC working group of VASCERN (https://vascern.eu/group/neurovascular-diseases-neurovasc-wg/)”.

Complete the form below and you will be allowed to download the file containing the data items.

Thank you in advance for your attention to the collective effort we have initiated.

CADASIL

First name(Required)

Surname(Required)

E-mail address(Required)

Institution(Required)

Medical speciality(Required)

City/town(Required)

Country(Required)

Consent(Required)

I acknowledge and consent to use the information I have supplied in the form. You can find detailed information on how your data is stored and managed in the privacy statement below.

VASCERN Privacy Statement

1. Introduction

VASCERN is committed to protect your personal data and to respect your privacy. The present Privacy Statement explains the way your data is collected and processed, how that information is used and what rights you have in relation to these personal data. It also specifies the contact details of the responsible Data Controller with whom you may exercise your rights.

All the information collected on this form will be treated in compliance with the General Data Protection Regulation (GDPR) (Regulation EU N° 2018/1725) of the European Parliament and of the Council of 23 October 2018 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data.

The present Privacy statement will remain in effect until further notice.

2. Which data do we collect and why and how do we process your personal data?

This form is dedicated to collect information for the purpose of VASCERN and its mission to improve the diagnosis and follow up of patients with rare vascular diseases. We collect your contact details only when the purpose of the Form requires so. This can include first name, last name, email address, institution or organisation and country. Other details can be additionally asked in some specific forms. Your personal data may be used for contacting you, only when this is a precise requirement for data processing and/or to obtain further details concerning your responses. Please note that your personal data will not be used for an automated decision-making including profiling.

3. Who has access to your personal data?

Your personal data will be collected, stored and used by the members of VASCERN that will be in charge of the form processing. VASCERN does not share personal data with unrelated Third Parties and respects the confidentiality of your data, excluding its use for any other purpose than its activities.

4. How do we store and protect your personal data?

VASCERN secures your personal information from unauthorized access, use or disclosure. VASCERN secures the personally identifiable information you provide on computer servers in a controlled, secure environment, protected from unauthorized access, use or disclosure. For security reasons the VASCERN Web Site uses the Secure Socket Layer (SSL) connections for the transfer of data.

In some cases, the data extracted from the forms could be exported into the internal storage system of VASCERN, including OneDrive and/or Microsoft Teams. Please note that only VASCERN members can access the data stored in these servers and that we have strict rules of confidentiality concerning the information stored thereby. Nevertheless, these data will only be used for the strict purpose of the form processing and analysis.

5. How long do we keep your personal data?

VASCERN organisation only keeps your personal data for the time necessary to fulfil the purpose of the form. During this time, the data will remain stored in the internal storage system of VASCERN, either OneDrive and/or Microsoft Teams. Once the purpose of the form will be fulfilled, these data will be permanently removed from our internal storage systems. However, you can ask, at any time, the responsible person for the Form to remove your data. For this purpose, you can directly contact the VASCERN Coordination team (vascern.coordination@aphp.fr).

6. What are your rights and how can you exercise them?

You have specific rights as a ‘data subject’ under Chapter III (Articles 14-25) of Regulation (EU) 2018/1725, in particular the right to access your personal data and to rectify them in case they are inaccurate or incomplete. Where applicable, you have the right to erase your personal data, to restrict the processing of your personal data, to object to the processing, and the right to data portability. Whatever the reason, you can exercise your rights by contacting the responsible person of the form through the contact form on the website or directly contact the VASCERN Coordination team (vascern.coordination@aphp.fr). Note that you have the right to object to the processing of your personal data, according to the Article 5(1)(a) of the Regulation (EU) 2018/1725 (https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32018R1725).

By responding to the form, you have consented to provide your personal data to VASCERN for the corresponding processing operation. You can withdraw your consent at any time by notifying the data controller. The withdrawal of your consent will not affect the lawfulness of the processing carried out before you have withdrawn the consent.

7. Additional information / Contact
If you would like to exercise your rights under Regulation (EU) 2018/1725, if you have comments, questions or concerns, or if you would like to submit a complaint regarding the collection and use of your personal data, please feel free to contact the person in charge of the form by filling the Contact Form on the website. You may also contact the VASCERN Coordination team by directly sending your request to: vascern.coordination@aphp.fr.