Information for patients with acute lymphoblastic leukaemia
Introductory information
Acute lymphoblastic leukemia (ALL) is a cancer of the hematopoietic system. In order to further improve the treatment of this disease in the future, the Czech Leukemia Group for Life (CELL) has created a database to collect data from as many patients with this disease as possible (hereinafter referred to as the "ALL database").
The database is used to enter data from the examinations performed, the patient's health status, as well as information about the treatment used and its results. The anonymised data from the Czech Leukaemia Life Group are provided for joint analysis within the European Study Group on Adult Acute Lymphoblastic Leukaemia (EWALL) as part of a long-standing collaboration. International data sharing is a necessity for this rare disease, as many parameters cannot be validly analysed due to the low number of patients at national level. The results of common European analyses have a direct impact on improving the quality of care for ALL patients.
It is desirable and necessary to continuously evaluate the results of treatment not only for each individual patient, but also for entire cohorts of patients. From the results of the data analyses, it is then possible to adjust treatment on an individual level, but also to make recommendations aimed at optimising the monitoring and treatment of ALL patients on a transnational (or global) scale.
Who is the administrator of your personal data?
Institute of Hematology and Blood Transfusion, ID 00023736, located at U Nemocnice 2094/1, 128 20 Prague - Nové Město (hereinafter referred to as "IHBT" or "the administrator")
What data about you do we transfer to the ALL database?
The IHBT transmits the following data about its patients to the ALL database: data about your health condition to the extent necessary (especially data from examinations performed, health status, information about the treatment used and its results, side effects of treatment).
We obtain the aforementioned personal data either directly from you or from the doctors who have cared for you before us.
The data transmitted to the ALL database is kept in pseudonymised form, i.e. the processed data will be kept under a unique code that only the IHBT is able to identify. The Czech Leukaemia Group for Life, as the database manager, is thus unable to associate the data transmitted by us with your person.
Why do we transfer your data to the ALL database and what is the legal reason for this?
In order to further improve the treatment of ALL in the future and to enable further scientific research, it is necessary to transfer your data to the ALL database for this purpose.
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 field 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 will be passed on to the ALL database administrator, the Czech Leukaemia Group for Life.
As a matter of principle, we do not transfer your personal data abroad. Only anonymised data, i.e. data that can no longer be associated with your person and are 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 be 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 are no longer needed for the purposes for which they were collected, i.e. for scientific research purposes.
Right to object to the processing of personal data
Given that the processing of your personal data is carried out for the purposes of scientific research, 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 in the situation where we process some of your personal data in order 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 post 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.