Information for patients with chronic myeloid leukaemia
Introductory information
Chronic myeloid leukemia (CML) is a hematopoietic malignancy whose treatment and prognosis has changed fundamentally for the better with the advent of new drugs that have become the new standard of care for patients with newly diagnosed CML. Given this literally revolutionary change in the current treatment approach, it is desirable and necessary to continuously evaluate the treatment outcomes not only for each individual patient but also for entire cohorts of patients. From the results of the data analysis, it is then possible to adjust treatment not only at the individual level, but also to make recommendations aimed at optimising the monitoring and treatment of CML patients on a global scale.
Thus, a database called INFINITY has been created to collect data on CML patients. The INFINITY project currently involves 5 centres of specialised haematological care - the Internal Hematology and Oncology Clinic of the Brno University Hospital, the Institute of Hematology and Blood Transfusion, the Internal Hematology Clinic of the Královské Vinohrady University Hospital, the 1st Internal Clinic - Department of Haematology of the 1st University Hospital and the IV. Internal Hematology Clinic of the Hradec Králové University Hospital. Participation of other centres caring for CML patients is welcome and therefore the circle of collaborating centres can be further expanded.
The INFINITY database has also become part of the international project of the European Leukemia Network called EUTOS for CML (The European Treatment and Outcome Study), specifically part of the European CML Registry based in Munich, Germany, and the CML BlastCrisis registry managed by the Institute for Medical Information Processing, Biometry and Epidemiology (IBE) of Ludwig-Maximilians-University also in Munich, Germany.
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 20 Prague - Nové Město (hereinafter referred to as the "Administrator" or "IHBT")
What data do we process about you?
Within the INFINITY database, we collect and maintain the following data about you: your health status in the necessary scope of basic data about your disease (CML), date of diagnosis, stage of the disease, data from the examinations performed, health status, information about the treatment used and its results, side effects of treatment).
We obtain the above personal data either directly from you or from the doctors who have cared for you before us.
The data is kept in the INFINITY database in a pseudonymised form, i.e. the processed data will be kept under a unique code that only the OHCHR is able to identify. Thus, your identity is not known to other departments involved in maintaining the INFINITY database.
Why do we process your data and what is the legal reason for this?
In order to further improve the treatment of chronic myeloid leukaemia in the future and to enable further scientific research, it is necessary to keep and monitor your data within the INFINITY database for this purpose.
The processing of your personal data is thus necessary for the fulfilment of the public interest task 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 will be transferred to the individual collaborating administrators, health service providers who are involved or will be involved in the INFINITY project and The European CML Registry.
With the exception of the European CML Registry, we do not transfer your personal data abroad as a matter of principle. Only anonymised data that can no longer be associated with your person and that 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 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 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
In view of the fact that the processing of your personal data is carried out for scientific research purposes, 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.