Information for patients who have undergone treatment using therapeutic hemapheresis and for tissue and cell donors who have undergone this method of procurement
Introductory information
In order to collect data on the treatment of patients undergoing therapeutic hemapheresis and donors undergoing this method of procurement, the World Apharesis Registry, a registry of therapeutic hemapheresis (hereafter referred to as theWAA Registry), has been established at Umea University, Sweden. The primary aim of this registry is to improve the safety of therapeutic hemapheresis and to improve and develop therapeutic apheresis techniques. To this end, the WAA Registry includes patient data such as diagnosis, the therapeutic procedure performed and donor data on tissue and cell separation and any adverse side effects of these procedures.
Who is the administrator of your personal data?
The Institute of Hematology and Blood Transfusion, ID 00023736, with registered office at U Nemocnice 2094/1, 128 00 Prague - Nové Město (hereinafter also referred to as the "Administrator" or "ÚHKT")
What data about you do we provide to the WAA Registry?
The following information is submitted to the WAA: the type and extent of the procedure performed, the health status of patients and donors, and the side effects of the therapy.
We obtain the above personal data either directly from you or from the doctors who have cared for you before us.
The data transmitted to the WAA is kept in a pseudonymised form, i.e. the data processed will be kept under a unique code that only the IHBT is able to identify. Umea University in Sweden, as the manager of the WAA register, is thus unable to associate the data transmitted by us with your person.
Why do we transfer your data to the WAA registry and what is the legal reason for this?
The primary aim of the WAA registry is to improve the safety of therapeutic hemapheresis and the development of these procedures. The processing of data on individuals who have undergone the subject collection method is necessary to further scientific research and the development of new procedures in this field, which may significantly increase the benefits of treatment for future patients. For this reason, the data are thus transferred to the WAA registry.
The processing of your personal data is thus necessary for the fulfilment of a task carried out in the public interest consisting of research in this area pursuant to Article 6(1)(e) in conjunction with Article 9(2)(j) of Regulation (EU)2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation).
Who can we disclose your personal data to?
Your personal data is transferred to the WAA controller, Umea University, based in Sweden.
With the exception of the WAA, we do not transfer your personal data abroad as a matter of principle. Only anonymised data, i.e. data that can no longer be associated with your person and is not personal data within the meaning of the General Data Protection Regulation, may be transferred abroad.
Rights of the data subject
As a data subject, data protection legislation grants you a number of rights. However, some of them are limited by the nature of the reason for processing the personal data. You have the following rights in relation to the personal data processed:
Right of access to personal data
You obviously have the right to know what data is being processed about you, for what purpose, for how long, where we obtained the data, whether and to whom we are transferring it. You also have the right to be informed of your other rights in relation to this data. This document is mainly intended to inform you, but we are ready to provide you with confirmation or clarification on any point of this information.
Right to rectification of personal data
If you discover that the personal data we process about you is inaccurate or incomplete, you have the right to request that we complete or correct it without undue delay.
Right to restriction of processing of personal data
This right allows you to request, in certain cases, that certain of your personal data be marked and not further processed for a certain period of time. This is not the same as the right to erasure, as the restriction of processing is not permanent. You have the right to have us restrict the processing of your personal data if:
- you contest the accuracy of the data we process about you for the time necessary to verify its accuracy,
- we no longer need to process your personal data but you require it for the establishment, exercise or defence of legal claims,
If processing is restricted, the data may only be processed with your consent or for the establishment, exercise or defence of legal claims, for the protection of the rights of another person, whether natural or legal, or for reasons of important public interest.
Right to erasure
In certain cases, as a data subject, you may exercise the right to have your personal data erased, or the right to be forgotten. As far as processing in a database (register) is concerned, you will only be able to exercise this right in cases where your personal data is no longer needed for the purposes for which it was collected, i.e. scientific research.
Right to object to the processing of personal data
Given that the processing of your personal data is carried out for the purpose of scientific research to improve the safety and efficacy of therapeutic procedures and procedures for the preparation of tissues and cells, you have the right to object to the processing of your personal data on grounds relating to your particular situation. However, you cannot exercise your right to object to the processing of your personal data where we would process some of your personal data to fulfil a scientific purpose in the public interest.
Right to lodge a complaint with a supervisory authority
The exercise of the rights set out so far is without prejudice to your right to lodge a complaint with the Data Protection Authority. You can find the current contact details directly on the website of the Data Protection Authority (www.uoou.cz). You can lodge a complaint at any time when you have doubts about whether your personal data is being processed as it should be, i.e. unlawfully or in breach of the law.
How can I exercise individual rights?
For all matters relating to the processing of your personal data, whether it is an enquiry, exercising a right, making a complaint or otherwise, you can contact our Data Protection Officer in the following ways:
- by mail or in person at U Nemocnice 1, 128 00 Prague 2,
- by e-mail at poverenec@uhkt.cz,
We will process your request without undue delay, but within a maximum of one month. In exceptional cases, in particular due to the complexity of your request, we are entitled to extend this period by a further two months. We will, of course, inform you of any such extension and the reasons for it.