Privacy Policy for website visitors
We are delighted about your interest in our ADPedKD registry. Data protection has a high priority for the management of ADPedKD. The use of the Internet pages of ADPedKD when you visit our website is possible without any indication of personal data; however, if a data subject wants to obtain a username and password via our website by using the registration form, processing of personal data becomes necessary.
The processing of personal data, such as the name, address, e-mail address, or telephone number of a data subject shall always be in line with the General Data Protection Regulation (GDPR), and in accordance with the country-specific data protection regulations applicable to ADPedKD. By means of this data protection declaration, we would like to inform the general public of the nature, scope, and purpose of the personal data we collect, use and process of website visitors. Furthermore, data subjects are informed, by means of this data protection declaration, of the rights to which they are entitled.
ADPedKD has implemented numerous technical and organizational measures to ensure the most complete protection of personal data processed through this website. However, Internet-based data transmissions may in principle have security gaps, so absolute protection may not be guaranteed. For this reason, every data subject is free to transfer personal data to us via alternative means, e.g., by telephone.
1. Definitions
The data protection declaration of ADPedKD is based on the terms used by the European legislator for the adoption of the General Data Protection Regulation (GDPR). Our data protection declaration should be legible and understandable for the general public, as well as our customers and business partners. To ensure this, we would like to first explain the terminology used.
In this data protection declaration, we use, inter alia, the following terms:
a) Personal data
Personal data means any information relating to an identified or identifiable natural person (“data subject”). An identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.
b) Data subject
Data subject is any identified or identifiable natural person, whose personal data is processed by the controller responsible for the processing.
c) Processing
Processing is any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.
d) Restriction of processing
Restriction of processing is the marking of stored personal data with the aim of limiting their processing in the future.
e) Profiling
Profiling means any form of automated processing of personal data consisting of the use of personal data to evaluate certain personal aspects relating to a natural person, in particular to analyze or predict aspects concerning that natural person's performance at work, economic situation, health, personal preferences, interests, reliability, behavior, location or movements.
f) Pseudonymisation
Pseudonymization is the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organizational measures to ensure that the personal data are not attributed to an identified or identifiable natural person.
g) Controller or controller responsible for the processing
Controller or controller responsible for the processing is the natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data; where the purposes and means of such processing are determined by Union or Member State law, the controller or the specific criteria for its nomination may be provided for by Union or Member State law.
i) Recipient
Recipient is a natural or legal person, public authority, agency or another body, to which the personal data are disclosed, whether a third party or not. However, public authorities which may receive personal data in the framework of a particular inquiry in accordance with Union or Member State law shall not be regarded as recipients; the processing of those data by those public authorities shall be in compliance with the applicable data protection rules according to the purposes of the processing.
j) Third party
Third party is a natural or legal person, public authority, agency or body other than the data subject, controller, processor and persons who, under the direct authority of the controller or processor, are authorized to process personal data
2. Name and Address of the Controller
Controller for the purposes of the General Data Protection Regulation (GDPR), other data protection laws applicable in Member states of the European Union and other provisions related to data protection is:
Universitaire Ziekenhuizen Leuven
The website administrator is the University of Cologne.
Contact details: www.adpedkd.org/index.php
3. Cookies
The Internet pages of ADPedKD use cookies. Cookies are text files that are stored in a computer system via an Internet browser.
Many Internet sites and servers use cookies. Many cookies contain a so-called cookie ID. A cookie ID is a unique identifier of the cookie. It consists of a character string through which Internet pages and servers can be assigned to the specific Internet browser in which the cookie was stored. This allows visited Internet sites and servers to differentiate the individual browser of the subject from other Internet browsers that contain other cookies. A specific Internet browser can be recognized and identified using the unique cookie ID.
Through the use of cookies, ADPedKD can provide the users of this website with more user-friendly services that would not be possible without the cookie setting.
By means of a cookie, the information and offers on our website can be optimized with the user in mind. Cookies allow us, as previously mentioned, to recognize our website users. The purpose of this recognition is to make it easier for users to utilize our website. The website user that uses cookies, e.g. does not have to enter access data each time the website is accessed, because this is taken over by the website, and the cookie is thus stored on the user's computer system. Another example is the cookie of a shopping cart in an online shop. The online store remembers the articles that a customer has placed in the virtual shopping cart via a cookie.
The data subject may, at any time, prevent the setting of cookies through our website by means of a corresponding setting of the Internet browser used, and may thus permanently deny the setting of cookies. Furthermore, already set cookies may be deleted at any time via an Internet browser or other software programs. This is possible in all popular Internet browsers. If the data subject deactivates the setting of cookies in the Internet browser used, not all functions of our website may be entirely usable.
4. Collection of general data and information
Through the registration form on the website the following personal data are collected: name and e-mail address, of the study investigator. This is necessary to obtain a username and password in order to become a participating center. The email address will also be used to send a newsletter yearly.
The website of ADPedKD collects a series of general data and information when a data subject or automated system calls up the website. This general data and information are stored in the server log files. Collected may be (1) the browser types and versions used, (2) the operating system used by the accessing system, (3) the website from which an accessing system reaches our website (so-called referrers), (4) the sub-websites, (5) the date and time of access to the Internet site, (6) an Internet protocol address (IP address), (7) the Internet service provider of the accessing system, and (8) any other similar data and information that may be used in the event of attacks on our information technology systems.
When using these general data and information, ADPedKD does not draw any conclusions about the data subject. Rather, this information is needed to (1) deliver the content of our website correctly, (2) optimize the content of our website as well as its advertisement, (3) ensure the long-term viability of our information technology systems and website technology, and (4) provide law enforcement authorities with the information necessary for criminal prosecution in case of a cyber-attack. Therefore, ADPedKD analyzes anonymously collected data and information statistically, with the aim of increasing the data protection and data security of our project, and to ensure an optimal level of protection for the personal data we process. The anonymous data of the server log files are stored separately from all personal data provided by a data subject.
5. Routine erasure and blocking of personal data
The data controller shall process and store the personal data of the data subject only for the period necessary to achieve the purpose of storage, or as far as this is granted by the European legislator or other legislators in laws or regulations to which the controller is subject to.
If the storage purpose is not applicable, or if a storage period prescribed by the European legislator or another competent legislator expires, the personal data are routinely blocked or erased in accordance with legal requirements.
6. Rights of the data subject
a) Right of confirmation
Each data subject shall have the right granted by the European legislator to obtain from the controller the confirmation as to whether or not personal data concerning him or her are being processed. If a data subject wishes to avail himself of this right of confirmation, he or she may, at any time, contact any employee of the controller.
b) Right of access
Each data subject shall have the right granted by the European legislator to obtain from the controller free information about his or her personal data stored at any time and a copy of this information. Furthermore, the European directives and regulations grant the data subject access to the following information:
the purposes of the processing;
the categories of personal data concerned;
the recipients or categories of recipients to whom the personal data have been or will be disclosed, in particular recipients in third countries or international organisations;
where possible, the envisaged period for which the personal data will be stored, or, if not possible, the criteria used to determine that period;
the existence of the right to request from the controller rectification or erasure of personal data, or restriction of processing of personal data concerning the data subject, or to object to such processing;
the existence of the right to lodge a complaint with a supervisory authority;
where the personal data are not collected from the data subject, any available information as to their source;
the existence of automated decision-making, including profiling, referred to in Article 22(1) and (4) of the GDPR and, at least in those cases, meaningful information about the logic involved, as well as the significance and envisaged consequences of such processing for the data subject.
Furthermore, the data subject shall have a right to obtain information as to whether personal data are transferred to a third country or to an international organisation. Where this is the case, the data subject shall have the right to be informed of the appropriate safeguards relating to the transfer.
If a data subject wishes to avail himself of this right of access, he or she may, at any time, contact any employee of the controller.
c) Right to rectification
Each data subject shall have the right granted by the European legislator to obtain from the controller without undue delay the rectification of inaccurate personal data concerning him or her. Taking into account the purposes of the processing, the data subject shall have the right to have incomplete personal data completed, including by means of providing a supplementary statement.
If a data subject wishes to exercise this right to rectification, he or she may, at any time, contact any employee of the controller.
d) Right to erasure (Right to be forgotten)
Each data subject shall have the right granted by the European legislator to obtain from the controller the erasure of personal data concerning him or her without undue delay, and the controller shall have the obligation to erase personal data without undue delay where one of the following grounds applies, as long as the processing is not necessary:
The personal data are no longer necessary in relation to the purposes for which they were collected or otherwise processed.
The data subject withdraws consent to which the processing is based according to point (a) of Article 6(1) of the GDPR, or point (a) of Article 9(2) of the GDPR, and where there is no other legal ground for the processing.
The data subject objects to the processing pursuant to Article 21(1) of the GDPR and there are no overriding legitimate grounds for the processing, or the data subject objects to the processing pursuant to Article 21(2) of the GDPR.
The personal data have been unlawfully processed.
The personal data must be erased for compliance with a legal obligation in Union or Member State law to which the controller is subject.
However, destruction will not be possible where:
either the retention is required by a statutory regulation;
or the preservation is reasonably considered important for the protection of the legitimate interests of the data subject or those of his/her assignees.
If the personal data in question have been processed in such a way that tracing back to individual persons is reasonably impossible, they may be stored in anonymized form.
e) Right of restriction of processing
Each data subject shall have the right granted by the European legislator to obtain from the controller restriction of processing where one of the following applies:
The accuracy of the personal data is contested by the data subject, for a period enabling the controller to verify the accuracy of the personal data.
The processing is unlawful and the data subject opposes the erasure of the personal data and requests instead the restriction of their use instead.
The controller no longer needs the personal data for the purposes of the processing, but they are required by the data subject for the establishment, exercise or defence of legal claims.
The data subject has objected to processing pursuant to Article 21(1) of the GDPR pending the verification whether the legitimate grounds of the controller override those of the data subject.
Where the processing is restricted, personal data shall, with the exception of their storage, be processed only with the data subject's consent, or for the establishment or exercise of legal claims, or for the protection of the rights of another natural or legal person, or for important reasons of public interest.
f) Right to data portability
Each data subject shall have the right granted by the European legislator, to receive the personal data concerning him or her, which was provided to a controller, in a structured, commonly used and machine-readable format. He or she shall have the right to transmit those data to another controller without hindrance from the controller to which the personal data have been provided, as long as the processing is based on consent pursuant to point (a) of Article 6(1) of the GDPR or point (a) of Article 9(2) of the GDPR, or on a contract pursuant to point (b) of Article 6(1) of the GDPR, and the processing is carried out by automated means, as long as the processing is not necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.
Furthermore, in exercising his or her right to data portability pursuant to Article 20(1) of the GDPR, the data subject shall have the right to have personal data transmitted directly from one controller to another, where technically feasible and when doing so does not adversely affect the rights and freedoms of others.
g) Right to object
Each data subject shall have the right granted by the European legislator to object, on grounds relating to his or her particular situation, at any time, to processing of personal data concerning him or her, which is based on point (e) or (f) of Article 6(1) of the GDPR. ADPedKD shall no longer process the personal data in the event of the objection, unless we can demonstrate compelling legitimate grounds for the processing which override the interests, rights and freedoms of the data subject, or for the establishment, exercise or defence of legal claims.
There is no right to object for the processing of personal data necessary for the execution of an agreement or legal obligations by ADPedKD.
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If the data subject wishes to exercise the mentioned rights, he or she may, at any time, contact ADPedKD. The data subject also has the right to lodge a complaint with a supervisory authority.
7. Legal basis for the processing
Since the processing of personal data is necessary for the performance of a contract to which the data subject is party (e.g. protocol) , the processing is based on Article 6(1) lit. b GDPR.
8. Period for which the personal data will be stored
The criteria used to determine the period of storage of personal data is the respective statutory retention period. After expiration of that period, the corresponding data is routinely deleted, as long as it is no longer necessary for the fulfillment of the contract or the initiation of a contract.
9. Existence of automated decision-making
As a responsible entity, we do not use automatic decision-making or profiling.