Information for patients with myelodysplastic syndrome
Introductory information
Myelodysplastic syndrome (MDS) is a disease of the hematopoietic system. It occurs most commonly in adulthood in older age groups. The basis of the disease is a disorder of the "maturation" of blood cells in the bone marrow, resulting in a loss of blood cells in the blood. The course of the disease may be mild, requiring only monitoring, while at other times the blood disorder may rapidly worsen and require specific treatment. New and more effective treatments are always being sought to prolong and improve the quality of life of patients with this disease.
The National Registry of Patients with Myelodysplastic Syndrome (hereinafter referred to as the "MyDyS Registry"), managed by CZECH MDS GROUP, z.s., ID No.: 228 32 912, with registered office at U Nemocnice 2094/1, 128 20 Prague - Nové Město, is used to collect and evaluate basic data on patients, such as their age, gender, previous illnesses of the patient, data on the MDS disease and its course. The MyDyS registry also includes data on treatment and possible complications of treatment. The data is stored in a computerised database that meets strict security requirements. The MyDys registry is used for scientific purposes, to increase knowledge about the prevalence of MDS and its treatment.
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 also referred to as the "Administrator" or "IHBT")
What data about you are transmitted to the MyDyS registry?
The following information about you is submitted to the MyDyS registry: age, sex, previous illnesses, information about the MDS disease and its course (date of diagnosis, exact type of MDS, blood count values, results of bone marrow and other laboratory tests), information about treatment and possible complications of treatment.
We obtain the above personal information either directly from you or from the doctors who have cared for you before us.
The data transmitted to the MyDyS registry is kept in pseudonymised form, i.e. the data processed will be kept under a unique code that only the OHCHR is able to identify. CZECH MDS GROUP, z.s. as the administrator of the MyDyS register is thus unable to associate the data transmitted by us with your person.
Why do we transfer your data to the MyDyS register and what is the legal reason for this?
In order to further improve the treatment of MDS in the future and to enable further scientific research, it is necessary to transfer your data to the MyDyS registry 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 is only provided to the administrator of the MyDyS register, i.e. CZECH MDS GROUP, z.s.
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 which 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 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 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.