Information for patients who have undergone a hematopoietic cell transplant
Hematopoietic cell transplantation is a challenging, but in many cases the only treatment that can cure diseases that are incurable by other methods. At the same time, it is a relatively aggressive procedure that can be accompanied by a variety of often life-threatening complications. In order to reduce the risk of these complications and thus improve transplantation outcomes, it is essential to continuously analyse the effectiveness of this procedure in individual diseases, to continuously determine the outcomes of transplantation and its complications, and to modify and change transplantation procedures based on these data. For this reason, organisations called haematopoietic cell transplant registries have been set up to collect data on transplanted patients, analyse them statistically, and thus enable transplantation procedures to be adjusted on the basis of objective data. Data from patients transplanted in the Czech Republic are collected and analysed by individual transplant centres, which then provide them to one national Czech registry and at the same time send them to the international registry.
Who is the administrator of your personal data?
Institute of Hematology and Blood Transfusion, ID 00023736, with registered office at U Nemocnice 2094/1, 128 20 Prague - Nové Město
What data do we process about you?
The IHBT archives all your medical records, transplantation protocols and copies of reports that we send annually to the International Transplant Registry of the EBMT (European Society for Bone Marrow Transplantation), where all European transplant centres send their reports. This is a condition of membership of this organisation and entitles us to apply for grafts from unrelated donors in international registries and to participate in the cooperation of this organisation. Documentation is kept non-anonymously so that each individual patient can be identified, which is essential for the error-free performance of their care. Only authorised persons with a duty of confidentiality have access to the documentation held in the archives. All statistical data is then anonymous, so that identification of the patient by an unauthorised person is not possible. Data that are sent outside the IHBT are also anonymous, so that the persons working with these data cannot find out which patient they are from. They can only find out the diagnosis, date of transplantation, preparatory regimen, complications after transplantation, etc. Post-transplant patients are followed up at IHBT for life, with follow-ups at a later time after transplantation once every 12 months to detect any late complications after the procedure, and the data from these follow-ups are also sent to the transplant registries so that the chance of cure and long-term survival after transplantation and late complications after the procedure can be determined.
The National Hematopoietic Cell Transplant Registry at the I. Internal Clinic of the VFN Prague is a registry that collects information on the diagnosis, type of treatment, type of transplantation, post-transplantation course and outcome of patients who have undergone hematopoietic cell transplantation in the Czech Republic. The data are anonymous, so the person processing the data does not have access to the personal data of individual patients. The data contained in the National Registry of Hematopoietic Cell Transplants are not shared with any other persons, only the authorised data manager who carries out the relevant statistical processing has access to them. The data in the National Registry of Haematopoietic Cell Transplantations are kept in pseudo-anonymised form, i.e. the processed data are kept under a unique code that can be identified only by an authorised employee of the IHBT.
Why do we process your data and what is the legal reason for this?
The systematic maintenance and monitoring of data on patients who have undergone a haematopoietic cell transplant is essential for further scientific research and the development of new procedures in this field, which can significantly increase the benefits of treatment for future patients.
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 will only be held by IHBT and will not be disclosed to any unauthorised persons.
As a matter of principle, we do not transfer your personal data abroad. Only anonymised data that can no longer be associated with your person and which 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.